Road to a Lupus Cure

Guest Blog: Climbing Kilimanjaro for Lupus Awareness

noreply@blogger.com (Sophie - LFA) — Mon, 09 Sep 2013 19:13:00 +0000

by Jody Gehrmann

Conrad and Jody Gehrmann

Staying physically active since my lupus diagnosis has been a challenge, but my husband Conrad and I try to take on as much as my body will allow. As you read this, we are getting ready to climb Mount Kilimanjaro, a dormant volcanic mountain in Tanzania and one of the highest peaks in the world! Conrad and I wanted to challenge ourselves physically and mentally in a creative way to raise both awareness and funds for lupus research.

Nearly 20 years ago, I started to get really, really sick and after some time and several doctors’ visits, I was diagnosed with lupus. Lupus has made it difficult for me to take part in the same activities I used to do years ago. I can be driving in the car feeling perfectly fine and then a 102-degree fever will strike. As many of you who are living with lupus know, we can often look healthy, but it often masks serious pain and illness. We often can’t do things many others take for granted.

Climbing Mount Kilimanjaro has been one of my childhood dreams and I am excited to have the chance to achieve it. I know there have been times over the course of my illness that I did not believe I would have the opportunity or be well enough to do this. Together, my husband and I trained hard to be in the best shape possible to prepare for this climb. Although this will be a challenge, it’s going to be very meaningful for both of us.

We have been long-time supporters of Lupus Foundation of America and our local Pacific Northwest Chapter in Seattle. Over the past several months, my husband and I have been educating our friends about the disease while asking them to pledge support directly to the Foundation to honor our climb. With the support of our friends and family, we have raised $50,000!

As we conquer the mountain, we hope you can match our efforts to conquer lupus. Please donate today and help the Foundation raise another $50,000 to find safe, tolerable and effective treatments for the 1.5 million Americans living with lupus.

The Importance of Minimizing the Communication Gap

noreply@blogger.com (Sophie - LFA) — Tue, 03 Sep 2013 23:12:00 +0000

by Joan T. Merrill, MD


Dr. Joan T. Merrill, Medical Director

Several years ago the Lupus Foundation of America collaborated with Lupus Europe and the biopharmaceutical company UCB on a survey of people with lupus. In the United States, 531 patients participated. Most (93%) were women, 86% were between 20–50 years old, more than half were married and almost as many had children. If you were to take a poll of patients in my clinic, this would pretty well describe them.

So how did 531 people with lupus think they were doing? 69.2% said that they have 3 or more flares each year. The most common problems reported included fatigue, arthritis, muscle pain and skin rashes. More than half of the participants reported depression. When asked about current medications, only 44% said that they were satisfied and 45% reported that their treatments impair daily activities or work.

But when I ask my patients how they are doing, most will say pretty well. Maybe they will report some symptoms, but will often blame the weather or stress, making it easy for me to assume that that nothing important happened. But in a busy clinic, that may be exactly what I want to believe. So most of the time, the medical visits with my patients are pleasant and fairly routine. And if you look at the medical literature, you are unlikely to see reports of more than one or two mild-moderate flares/year per patient.

Well, we know that the patients disagree about that. In fact, several studies of lupus have found that patients opinions on how they are doing are completely mismatched with those of the doctors. Doctors who work on clinical research express frustration that patients have trouble differentiating chronic damage or depression from lupus flares, and the disconnect between doctors and patients opinions is often attributed to this. But are we certain about who is making which mistake?

Most clinical trials in lupus find that only 40-50% of patients meet the cutoffs we (the doctors) set to define improvement. What do we think is happening to the other 50-60%? Are doctors missing lupus flares because we are not as good as we think we are at recognizing what is lupus and what is “other?” Another poll of patients with lupus was performed by the pharmaceutical company GlaxoSmithKline. This survey found a three way breakdown of communications, with patients minimizing their symptoms both to their doctors and their families. This can’t be helping the doctors to recognize flares. What can be done about this?

It might be difficult to make doctors listen better or to convince patients to risk the emotional discomfort of complaining. But what if there was an efficient written tool to accurately track symptoms and responses to treatments, both from the doctors and the patients perspectives? This might be set-up to clearly distinguish lupus problems from non-lupus problems and supplement information that is lost during intermittent, time-limited clinic visits. The Lupus Foundation of America is dedicated to solving the cruel mystery of lupus and developing tools for patients and doctors to improve communication. We welcome input about what you think and what type of tools would help ensure successful communication with your doctor. Leave your comment below with your ideas!

Guest Column: Back to School with Sodium Girl

noreply@blogger.com (Sophie - LFA) — Mon, 19 Aug 2013 18:19:00 +0000

Jessica Goldman

By Jessica Goldman

As a kid, August meant two things: rushing to finish my summer reading list (ugh) and back to school shopping (yes!). And when I say shopping, I don’t mean buying jeans or the coolest new light up high tops. I’m talking supplies: multi-colored pens, neon colored notebooks, crisp lined paper, maybe even a protractor and a calculator. Or three. Yes, I was a total nerd.

But now, as an adult, I realize my enthusiasm for back to school shopping resulted from more than a love for paper goods and writing utensils. It came from the delight in creativity (remember those colored pens?) and the commitment to have fun while making preparations for the year ahead.

Which brings me to this big point -- to live a full life with a chronic illness, at any age, requires a lot of energy, forethought, and yes, preparation. And going back to school is no exception to the rule. So as you or your kids get ready for pre-K to college, it’s important to approach your medical and health needs with the same zeal as those neon notebooks; to involve your young students in the process; and above all, to make it fun.

Parent Teacher Student Meeting

You don’t have to wait until Halloween to meet with school staff. Teachers usually return a week or so before the first day to set up classrooms and prepare for the year ahead. So whether you call the office or stop by to set up a meeting, make sure to get some one-on-one time before the first bell rings.

And of course, don’t feel limited to the homeroom teacher. Invite anyone who needs to be aware of your child’s needs (like the PE teacher, the school nurse, head of the cafeteria). And remember to make it fun! Bring cookies and milk, tea and sandwiches, or perhaps something special for the homeroom. Simple gestures like this help create a positive working relationship for the months and years to come.

Show and Tell

Before you can ask for help, it is essential to know what you need. So make a date with your child or teen to talk about the challenges of school (whether it is a special diet, the need to leave early for doctors appointments, or telling the other kids about their condition). And most importantly, figure out ways (together!) to overcome each one.

For younger kids, a big poster board and stickers help to literally map out this “big picture” approach and strategies. Or for a more involved crafts project, write your own story book about living with lupus that can be read to the class.

As for teens and young adults, give them the reins as much as possible. Such as helping them write notes to their teachers, creating special protocol sheets for different health circumstances, or organizing medical info folders for the essential staff. Need more artsy inspiration? Check out these food allergy tattoos.

It’s just one of many creative solutions that make taking care of medical challenges easy and fun.

Meet, Play, Love

The classmates in your child’s life are just as important as the school staff. And getting to be like the other kids -- participating in play dates and sleepovers -- is a huge part of staying healthy and happy. So it is important to get other parents involved, so that both you and your child have the support and confidence you need.

But these conversations don’t have to be dull. Again, THINK FUN. Invite everyone over for an afternoon, and while the kids pretend to be dinosaurs or space warriors, break the ice with the moms and dads by serving up lemonade and treats. Then let them know the kinds of things your child would need during a playdate or sleepover, gauge their comfort with these requests, invite their own suggestions, and of course always express your appreciation for their support. Because when you welcome others into your world with enthusiasm, they’ll be excited to play along.

As for teens and college students, make use of social networks! Encourage them to use Facebook and Twitter to find peers (beyond their classroom) with the same health needs. The exchange of online support will not only help them feel a part of greater community but will also generate new ideas on how to live a full, healthy life.

For more special diet, low-sodium advice, recipes, and adventures, visit www.SodiumGirl.com. And pick up a copy of Sodium Girl’s Limitless Low-Sodium Cookbook from Amazon, Barnes & Noble, or anywhere books are sold.

Health Educator's Perspective: The positive effects of true wellness with lupus

noreply@blogger.com (Sophie - LFA) — Tue, 06 Aug 2013 13:00:00 +0000

Dawn Isherwood, Health Educator

We hope everyone is having a great summer and enjoying time outside with friends and family.

Even with the best medical technology available, true wellness must come from within. Genetics, environmental factors and hormonal factors can all be influenced by our everyday lifestyle choices. As we all know, current medication therapies for lupus can be difficult and may cause nausea, weight gain or loss as well as possible bone thinning. Learning to complement your treatment with healthy lifestyle choices may help decrease symptoms and may lead to minimizing the need for difficult therapies.

So why are lifestyle factors so important when treating the whole person who has been diagnosed with lupus? Lupus is a disease of the immune system which can result in inflammation and the pain and symptoms associated with it. The immune system is very sensitive to lifestyle factors and responds very favorable to healthier choices particularly when it comes to diet, exercise and stress management.

Eating for health: While there is no special diet for lupus, it is recommended that those with lupus should try to eat a nutritious, well-balanced and varied diet that contains plenty of fresh fruits and vegetables, whole grains (barley, brown rice, flaxseed, whole wheat pasta), moderate amounts of meats, poultry, and oily fish (salmon, trout, sardines), as fish oil has been found to help reduce inflammation. Try to avoid processed foods, like flour and high sugar items.

Let’s get moving: I encourage you to exercise regularly or engage in some kind of movement. Most people with lupus can take part in some form of activity. Making exercise a regular part of your life has been shown to decrease heart and joint issues and control weight gain caused by the use of corticosteroids. Studies indicate that exercise can be as effective as anti-depressant medications in controlling depression and anxiety that are often associated with chronic illness such as lupus.

Inflammation from lupus in the muscles, tendons and ligaments can lead to stiffness, pain and decreased mobility. Non-weight bearing exercises such as swimming, biking, tai chi and yoga can help decrease pain and stiffness, increase cardiovascular health and decrease stress and anxiety. Weight bearing exercise such as the elliptical machine, treadmill, walking and light weight lifting can help maintain muscle strength and bone density.

STRESS: There is no getting around the fact that there is stress in life and living with a chronic illness like lupus only piles on to those everyday stressors. Managing stress can have a significant impact your life and your lupus and improve your overall physical and emotional health.

Some simple ways to start are to identify the stressors in your life. Remember that there are things in your life that you can control and things that you cannot. Place your energy in those things you can control such as asking for help, learning to say no when you have the choice (don’t let those around you make you feel bad about saying no), listen to your body and rest when you need to, and don’t expect too much from yourself all the time (give yourself an emotional break). If your feel really overwhelmed, you may want to talk to your doctor or a counselor.

At the Lupus Foundation of America, we encourage everyone to take a look at their overall health. True wellness has been shown to have a very positive impact on lupus, along with your overall well-being. Always remember to check with your doctor before making any changes to your diet or exercise routines. For more information or if you have any questions, we invite you to call one of our health educators. You can also visit the Lupus Foundation of America’s website at lupus.org to learn more.

**

Dawn E. Isherwood, RN, BSN, is Health Educator for the Lupus Foundation of America. Dawn can be reached at 800-558-0121 or by filling out this contact form.

Activists Do Make a Difference

noreply@blogger.com (Sophie - LFA) — Tue, 16 Jul 2013 15:38:00 +0000

by Kimberly Cantor, Senior Director of Public Policy and Government Relations

Kimberly Cantor

I am inspired by you - by lupus activists. It is that simple. The excitement, enthusiasm, and empowerment felt during the recent Lupus Foundation of America National Lupus Advocacy Summit held June 24-25, 2013 was amazing. All across Capitol Hill, I heard “we are lupus activists; we are here to tell our stories and make our voices heard!” The Advocacy Summit is always an energizing and rewarding event, and 2013 was no exception.

More than 250 lupus activists representing 30 states and the District of Columbia joined forces and spoke with one voice on Capitol Hill. Lupus Activists asked their Senators and Representatives to support lupus research funding and the National Institutes of Health (NIH) and to co-sponsor H.R. 460, the Patients’ Access to Treatments Act (PATA), which seeks to ensure access to treatments for lupus and other chronic conditions.

Lupus activists reinforced their requests when they presented the National Lupus Research Petition with more than 30,000 signatures calling upon Congress to expand the research effort on lupus. In addition, lupus activists also came out in force online generating more than 3,500 e-mails and phone calls to Congress.

What is even more exciting is lupus activists were heard! On July 11, the Senate Appropriations Committee approved a draft of the fiscal year (FY) 2014 Labor-Health and Human Services-Education appropriations bill giving a boost in funding to the NIH. And while the FY 14 Labor-HHS bill has a long and difficult journey ahead, the draft measure demonstrated great support for lupus research funding and federal lupus programs. In addition since June 25, 13 Representatives have agreed to co-sponsor H.R. 460 (click here to see a full list of co-sponsors) bringing the total number of co-sponsors to 66.

The Foundation leads the fight to secure more funding for lupus research and lupus programs, from Capitol Hill to State Houses across the nation. We had an amazing day on Capitol Hill, but the success of advocacy is not measure on one day. To be truly effective, lupus activists must be engaged year round in communicating with their members of Congress on the importance of lupus research funding and on access to treatments.

Help us keep up the momentum to educate Congress on the urgent need to provide more resources for lupus research and access to lupus treatments. Congressman McKinley (R-WV), the sponsor of H.R. 460 and champion, is pushing us to reach 100 co-sponsors by this fall, and we need your help to get there! Please take a moment to send your Representative an e-mail today asking them to co-sponsor H.R. 460. Help us solve the cruel mystery of this unpredictable and devastating disease!

Bringing Lupus Advocacy to Capitol Hill and Beyond - National Lupus Advocacy Summit 2013

noreply@blogger.com (Sophie - LFA) — Mon, 01 Jul 2013 15:16:00 +0000

On June 25, more than 250 lupus activists from 30 states and the District of Columbia converged on Capitol Hill to ask Members of Congress to support increased lupus research funding and access to treatments. These activists participated in 173 meetings with Members and their staffers. In addition, activists from all over the country took action by sending more than 3,500 messages to Capitol Hill to tell their lupus stories and reinforcing the requests that were being made in person. We asked Erin Kotecki Vest from Los Angeles, one of the many activists to join us in Washington, DC, to reflect on her advocacy experience, including a meeting at the White House.

By Erin Kotecki Vest

From the day I was diagnosed with lupus, I knew I had to do something.

My family Googled the disorder and found very little information. And what they found scared the hell out of them.

When we finally got some good info from the Lupus Foundation of America, we were told research was scarce and drugs for the disorder even more scarce.

As I lost organs to surgeries and struggled with pain and fatigue and went from doctor to doctor, a lupus advocate was born.

As I continued to rely on my husband for support to get me through those tough days and to just pick up the slack around the house, a lupus advocate was born.

As my young children visited the hospital time and time again, or were rushed to a friend's house while Dad drove me to the emergency room, two little lupus advocates were born.

As part of the National Lupus Advocacy Summit, my family and I dipped back into my "other" life...the one I had before lupus changed it all. You see, I was (and still am when I feel well enough) a political blogger and social media strategist for BlogHer, Inc. Which basically means I took care of relationships with those important people in DC that make those important decisions and I managed things like Twitter and Facebook all for a living. I loved my job. I can not wait until I'm well enough to return to my job. And I'm not one to sit still very well.

So it occurred to me that I know some pretty darn important people, and they just might be able to help. After all, I do share my life online and millions have watched me go from interviewing President Barack Obama to an IV in my arm, receiving treatment, twice per month. And I KNEW more needed to know about auto-immune disorders and chronic illness. The toll is takes on our lives, on our finances, on our loved ones.

So I made the call. Or, more accurately, I sent the emails. And without hesitation the White House accepted my offer to sit down with my family, and a representative from the Lupus Foundation of America, to hear OUR story...and yours.

They want to help. They want the new Affordable Care Act to help. And we are all going to work together to make sure everyone stays informed on how to put the new healthcare.gov information and site to use for those who need it. But just as importantly...they listened. They listened as I talked about what many of us go through: the multiple doctors before we even know what the heck we're dealing with. The bills that never end because we don't have a cure, just ongoing treatments, the endless toll on our support systems- if we even HAVE support systems. And with wide eyes, like so many others, they listened with sympathy and awe learning for the first time what it's like to have lupus, an autoimmune disease, a chronic illness.

I also want to note that we were lucky enough to sit down with our own Congressman Buck McKeon. The Lupus Foundation of America folks set up the meeting and my family and I happily accepted. We need all the allies we can get in this fight- lupus is non-partisan.

Congressman McKeon was gracious and asked us many questions about the disorder. We, in turn, asked him to support HR 460 – The Patients’ Access to Treatment Act. I truly hope and EXPECT his support.

Lupus advocacy reached the White House this week and that is just the start. Now the real work begins as we turn our advocacy into funding, research, and relief for all of those- myself included- who suffer.

Editor's Note: It is not too late to make your voice heard. Visit our legislative action center to contact your Members of Congress today!

Guest Column: Summer Travel Packing List for Special Diets

noreply@blogger.com (Sophie - LFA) — Mon, 17 Jun 2013 16:20:00 +0000

by Jessica Goldman Foung

When lupus attacked her kidneys, Jessica Goldman Foung, also known as “Sodium Girl”, made significant changes to her life, including her diet. It wasn’t long before she began to blog about the adventures of living on a no-sodium diet. This month, Jessica shares with us a summer travel packing list for people with special diets .

With summer months come summer vacations: spontaneous road trips, flights across country, backpacking in the great beyond, and if you're really lucky, an escape abroad. No matter the destination, though, every trip requires preparation. And for those with special diets, the packing list has a few extra items to tend to -- mainly, preparing food for every meal of the day.

But dietary limitations don't have to take the spontaneity or flavor out of adventures. Nor do they have to add stress to your well-deserved R and R. With a little extra effort and the following tips, anyone with any dietary needs can stay full no matter where the journey takes them.

Pack Smart

First and foremost, carry emergency snacks with you at all times -- I'm talking granola bars, tortillas, nuts and seeds, berries, individual nut butter or tahini packets, microwave oats, grains and rice, chia seeds, and anything else non-perishable that fits easily (and lays flat) in a suitcase or day bag. These treats will come in handy during plane rides, breakfasts, and lunches when options are scarce.

Also, don't forget to look in the baby food aisle. Toddler-friendly fare may have more nutritional value than flavor, but the latest lines of purees don't taste half bad. And if you're really hungry with no options in sight, these packets will keep you full and provide a daily fill of vegetables. They're also perfect for backpacking trips and day hikes when you want to keep provisions light.

And if you are willing to check a separate bag outfitted with an ice pack and perishable food, then the options become limitless. Make whatever you want to eat and call the front desk at your first stop to ask for a small refrigerator for when you arrive.

Send Ahead
If you are staying somewhere for a while, don't be bashful; send your pantry favorites ahead of time. Ship all of the non-suitcase-friendly food via mail to your hotel and enjoy the cans of beans, chips, salsas, dressings, and other staples when you arrive. Sometimes you can even ask the concierge to do a little pre-arrival grocery shopping for other items, like fresh vegetables or fruit.

Forget The View, Get a Kitchen
When searching for hotels, look for spaces with small kitchenettes. If your hotel doesn't have those options, remember you can always ask for a refrigerator and even a microwave to be placed in the room for minimal to no cost.

You can also skip the hotel and rent through VRBO or Airbnb, options that usually include access to a kitchen, a small stove, or at the least, simple cooking tools (like microwaves and electric kettles). Which means you can prepare fuller meals if you need to and make snack packs for day trips, all in the comfort of your rented room.

Go Raw
Take a tip from stove-free foodies and stock up on pre-washed, packaged vegetables. Whether you snack on snap peas or chopped kale, softened in a microwave, you can keep eating green while on the go.

Use Friends, Real and Virtual
If you can stay with a friend, you've struck special diet gold. Their kitchen, pantry, and stove is now yours, guaranteeing you safe and satisfying meals when you want. But even when you travel without a friend to visit, that doesn't mean a helpful hand is far. Use social media tools, like Facebook, Twitter, and Yelp! to search for others with similar dietary needs. Post questions to find the best diet-friendly restaurants or grocery stores nearby. And discover places and eats that only locals know about.

Spruce Up Safe Foods
Salads, steamed rice, and scrambled eggs tend to be easy to come by at restaurants and even airport terminals, but without dressings, nuts, or other toppers, they can taste pretty bland. Consider packing add-ons like spice blends and non-leak containers filled with ready-to-eat beans or cooked grains -- items that will add welcome bulk and bite to these "safe" menu options. Or for a sweeter snack, blend chia seeds with yogurt or even jam that you find along the road to make a protein-rich pudding cup on-the-go!

Research
Before looking at the weather for the week, do some research about the food and culture of the city (or country) you plan to visit. Visit travel blogs to explore the cuisine, what's typically on a menu, and how it is traditionally prepared. That way, you can smartly navigate a menu and understand which items will fit within your dietary needs. If there is a language barrier, you can also ask the concierge at your hotel to call ahead to restaurants and ask for special preparations. And get Googling. Map out the nearest grocery stores to figure out where you can stock up on treats as soon as you land.

Share Resources
Sharing is caring, and when you give people links to your favorite blogs and recipes, suddenly they have all the tools they need to make amazing food for you. The more information you can provide the hotel and restaurants ahead of time, the better you will eat.

No English, No Problem
Are you going abroad, beyond the border, where the language sounds a lot different than it does in your hometown? Don't fret. Just use all the same tips suggested here. Do the research. Understand the food. Get to know your hotel's concierge and staff. Find people abroad (whether friends, tour guides, or trusty companions you meet on tour) that can help you navigate restaurants and foreign menus. Find grocery stores before you go that will have food you can eat. Or send products ahead of time. And don't forget to bring a dietary card; it can be easily translated and handed to hotel and kitchen staff. Keeping you from worrying about your next meal. Or trying to perfect a foreign accent.

For more special diet, low-sodium advice, recipes, and adventures, visit www.SodiumGirl.com. And pick up a copy of Sodium Girl’s Limitless Low-Sodium Cookbook from Amazon, Barnes & Noble, or anywhere books are sold.

Empowering Physicians - Improving Care

noreply@blogger.com (Sophie - LFA) — Tue, 04 Jun 2013 19:28:00 +0000

by: Dario Dieguez, Jr., Ph.D., Senior Research Program Manager, and Jenny Thorn Palter, Publications Director and Lupus Now Editor

Dario Dieguez, Jr., Ph.D.

Jenny Thorn Palter

Did you know that the subject of lupus is often given only 15 minutes in the medical school curriculum? That’s why we were so excited about the recent launch of The Lupus Initiative, a federally funded lupus education program for health care professionals being run by the American College of Rheumatology.

The Initiative’s goals are to help eliminate health disparities in the diagnosis and treatment of lupus. To do this, a broad range of people from across disciplines created tools and materials that could be used by health care professionals in any field of medicine. Our mission? To enable providers to recognize the signs and symptoms of lupus, to understand treatment options, and to more fully see the person behind the patient. We have worked on this project for the past four years. So we’re extra-proud to see it getting attention!

The area we worked in most was creating tools that physicians can use with their patients: the “Lupus: What You Need to Know” video; “Ask Me Three,” an illustrated story on the importance of adhering to the doctor’s treatment plan; a Symptom Tracker; expert lectures in Spanish and other Spanish language resources; and a lecture on the use of a Personal Health Record. Along the way we previewed the mobile app, watched the videos, kept up with the monthly conference calls, and worked alongside some of the most caring physicians and educators you could ever meet. And, always, always, we kept in mind the people who would benefit in the end from all this knowledge: those living with lupus.

The educational curriculum includes lectures, case studies, and a video reference library. Real-life personal stories about what it’s really like to live with lupus are offered as well. All this and more is at the physicians’ fingertips, online and absolutely free!

To date, these materials have already been used at Meharry Medical College in Nashville, Northwestern University Feinberg School of Medicine in Chicago, and Emory University School of Medicine in Atlanta. Faculty from other schools have agreed to incorporate the materials into their medical school instruction, including University of Colorado at Denver, George Washington University in Washington, DC, Johns Hopkins University in Baltimore, and University of California at San Francisco Medical Center. And faculty members from at least 20 additional institutions have expressed interest in using the materials, including at Yale University, Columbia University, Stanford University, and Duke University.

Every day saved in a lupus diagnosis, every piece of information recalled about a better treatment, each time a doctor really listens to a new patient—that’s when we know our efforts are making a difference. You can make a difference, too: Encourage your physicians to check out the website, at thelupusinitiative.org. Ask them to start a dialogue about these lupus educational materials when they’re on Doximity, the professional networking tool used exclusively by physicians and other health care professionals. Now it is time to get the word out and ensure medical schools and physicians are using the curriculum. Let’s get these tools into the helping hands of our providers—and the sooner the better!

The Lupus Initiative is led by the American College of Rheumatology in partnership with the U.S. Department of Health and Human Services’ Office on Women’s Health and Office of Minority Health and the U.S. Surgeon General. The initiative was established in response to advocacy efforts led by the Lupus Foundation of America and other groups to increase medical professional knowledge about lupus. Since 2005, the Lupus Foundation of America has worked to increase funding for health professional education. These efforts led to the introduction of landmark legislation, called the Lupus REACH (Research, Education, Awareness, Communications and Healthcare) Amendments Act, to strengthen federal programs that identify the causes and cure for lupus, improve lupus data collection and epidemiology, and enhance public and health professional awareness and understanding of lupus. Many of the bill’s provisions subsequently were implemented through non-legislative advocacy efforts led by the Foundation.

That's A Wrap! Thank You For Another Amazing Lupus Awareness Month!

noreply@blogger.com (Sophie - LFA) — Tue, 04 Jun 2013 18:09:00 +0000

Every June, we reflect back on the past month and are always amazed at the success of Lupus Awareness Month. It’s no different this year. Once again, we saw incredible participation during the month of May and that’s all thanks to people like you, along with our Chapters and partners.

Because of you, whether you shared or retweeted facts about lupus, held educational events in your community, joined a Walk to End Lupus Now™, or simply wore purple and told people why, more people than ever learned about lupus during the month of May than ever before.

Thanks to all of you, we:

Reached more than 2 million people weekly with lupus facts, graphics and other educational content
Educated more than 1,000,000 people about the signs and symptoms of lupus through our popular body infographic (right) on Facebook alone. See the full-sized version.
Had the highest monthly traffic on our website (lupus.org) in the history of the organization
Gathered more than 30,000 signatures on the petition to Congress asking them to support more lupus research

But the successes did not stop there. The response to Put On Purple Day, which was held nationally for the first time last year, was overwhelming! More than 500 people sent in photos of themselves, friends, family and even pets all dressed in purple. Multiple local and national TV anchors Put On Purple for lupus awareness, including Michael Strahan from Live with Kelly and Michael!


Michael Strahan from Live with Kelly and Michael wore our purple wristband and educated the audience about lupus	In Mobile, Alabama, the Fox 10 morning show Studio 10 talent wore purple in support of ‘Put on Purple Day’! Purple nails, purple makeup, purple clothes, purple everything!

This year, more buildings and landmarks were lit purple for Put On Purple or World Lupus Day than ever before, including for the first time ever, the famous Seattle Great Wheel (lit by our Pacific Northwest Chapter) and Los Angeles International Airport. And a big thank you goes out to our friends at Saks Fifth Avenue, who Put On Purple on 5th avenue for the second year in a row. Don’t they look fantastic?


Some of the Saks Fifth Avenue Staff POP for lupus awareness!	Congratulations to the Pacific Northwest Chapter for lighting the Great Wheel purple!

Because of an idea from lupus activist Suzette B., we lit LAX pylons purple for World Lupus Day!

Though Lupus Awareness Month may be over, our efforts continue year-round with your help. Thank you all again for your support and stay connected with us on Facebook, Twitter, this blog, or email for the latest in lupus research, treatments, and more. We can’t wait to see what we can achieve together next year!

Join the Fight to End Lupus Now

noreply@blogger.com (Sophie - LFA) — Fri, 31 May 2013 19:20:00 +0000

Lupus Awareness Month may be coming to a close, but our efforts continue year-round. We cannot do it alone. Stay involved with the Lupus Foundation of America. Find your nearest Chapter, join us for the National Lupus Advocacy Summit, join a Walk, add your Voice and sign the petition to Congress.

Today, people with lupus are leading healthier lives and living longer than at any time in history. Improvements in diagnosis, a greater understanding of how medications can work together to control symptoms, and increased knowledge of the effects of the disease have allowed better management of lupus over time.

As hard as it is to live with lupus, you play an important role. Thanks to progress fueled by people like you, we can share new hope for solving the cruel mystery of lupus and ending its devastating effects on millions of lives. Help continue the momentum and support our ongoing awareness, research, and education initiatives. Please give today.

The Power of Sharing Your Personal Story

noreply@blogger.com (Sophie - LFA) — Fri, 17 May 2013 14:00:00 +0000

Kim Cantor

by Kimberly Cantor, Senior Director of Advocacy and Government Relations

A personal story is powerful – to those who tell it and to those who hear it. On June 24 and 25, lupus activists from across the country will meet in Washington, DC for the National Lupus Advocacy Summit, where lupus activists will unite to tell their stories to help solve the cruel mystery of lupus.

The Lupus Foundation of America’s legislative successes would not be possible without the power of lupus activists across the country who work tirelessly to make their voices heard both locally as well as on a national level. For example, their compelling and personal stories have helped:

Secure more than $27 million for the National Lupus Patient Registry and lupus epidemiological studies at the Center for Disease Control and Prevention (CDC);
Illustrate the clear impact lupus has had on those who serve in the military by keeping lupus listed as a disease area eligible for research funding under the Peer Reviewed Medicare Research Program (PRMRP) at the Department of Defense resulting in more than $12 million in lupus research to-date; and,
Encourage 48 bi-partisan members of the United States House of Representatives to join the first-ever Congressional Lupus Caucus led by Representatives Tom Rooney (R-FL), William Keating (D-MA), Ileana Ros-Lehtinen (R-FL), and Jim Moran (D-VA).
Increase funding for health professional education, which led to the creation of The Lupus Initiative
Co-found the Ad Council's first national lupus awareness campaign on lupus along with U.S. Department of Health and Human Services' Office on Women’s Health (OWH)

However, there is still so much to be done. Lupus is one of the cruelest, most mysterious diseases on earth, yet research on lupus remains underfunded compared to its scope and devastation. Together, we can change this. During the first day of the Advocacy Summit, activists will receive training on basic advocacy principles and the Foundation’s legislative priorities. Day 2, activists will travel to Capitol Hill and meet with their Members of Congress to tell their lupus story, using their story to educate Congress on the Foundation’s legislative priorities, why these priorities are important to people with lupus and to raise awareness of the disease.

Sharing your story and engaging in advocacy is powerful and empowering. We encourage you to become a lupus activist and to engage with your Members of Congress through e-mails, phones call and in-district visits. Plus, there is still time to join the Foundation on June 24 and 25 for the National Lupus Advocacy Summit. Remember: just one story can and does make the difference.

Developing Clinical Trials for Lupus

noreply@blogger.com (Sophie - LFA) — Fri, 03 May 2013 19:19:00 +0000

By Dr. Joan T. Merrill

Dr. Joan Merrill

Clinical trials for lupus have been challenging. The main reason for this is that no two patients are exactly alike, not as people, not in terms of how the symptoms come and go, and not in the fine details of how the immune system disorder plays out. This means that no one treatment works for everybody and for those who might potentially benefit from a given treatment no one dose works for everybody.

When new treatments are tested in clinical trials, the FDA and the drug companies know about these issues, but the challenge is to come up with a simple protocol that can be tested on all kinds of different patients around the world and can answer two simple questions. Is the treatment reasonably safe and does it work better if you do give it than if you don’t give it? If these two conditions are met, the regulatory agencies can consider approving it for use in the clinic.

Think about this question, though: Does a treatment work better if you do give it than if you didn’t give it? To answer this question you just need more people to get better in a group who get the drug than in a group that receives placebo (or dummy treatment). So to answer this question it doesn’t matter if up to half the people participating in a clinical trial were never going to benefit from this treatment in the first place. In fact less than half of the people around the world who took Benlysta in the large international Phase III trials actually met the criteria for improvement. Still it did well enough to be approved, now, in a growing number of countries worldwide.

Here are the important questions that have not been answered by that simple question: Which patients are more likely to benefit from Benlysta? How can the dose be optimized for an individual patient? How can we tell, in patients for whom it is not working whether it will never work for them (in which case it should be stopped) or whether it might be of significant benefit if the amount of dose, timing of the dose, or combinations with other medications could be optimally adjusted? The answers to all of these things needs to be worked out and the fact that the FDA has approved Benlysta at only one dose to be given only at rigid monthly intervals is not helping matters.

But even if doctors in clinic were given more flexibility to practice the art of medicine in treating patients with new expensive biologics, it would be difficult to address these important questions about how best to treat individual patients using information from the clinical trials. Remember that a wide range of patients from all over the world, with disparate individual differences in their immune system were treated with Benlysta while still taking various additional lupus treatments, all of which are already at work changing the immune system of each of these patients in different ways. This superimposes a whole lot of treatment influences onto what we already know are different background immune disorders in the patients. In trying to figure out who is more likely to get benefit from Benlysta or how best to treat those individuals it will be difficult to sort all of this out.

How will we sort all of this out? I want to tell you about our recent study that a large team of doctors and scientists have recently completed as a collaboration between the Oklahoma Medical Research Foundation and Pfizer Pharmaceuticals. The name of the study is BOLD which stands for Biomarkers of Lupus Disease. Biomarkers are detailed bits of biological information that can be picked up from a simple blood test which can be used to sort out very complex questions about individual differences that perturb the balance of the immune system. Some biomarkers that are active in some patients might suggest a disorder that Benlysta could fix. Others might suggest that different types of treatments would be better. Importantly, it has been hard to figure out in any previous studies what the impact of all the various lupus treatments are on these biomarkers which might really confuse a doctor if they were trying to pick out a treatment to either add on or switch a patient to. The BOLD study was designed to begin looking at this very question. Patients who agreed to be in the study were considered qualified to participate if they had active disease, but at the start of the study they could be on various background treatments. A blood sample was taken. After that, unlike most clinical trials, the strong background immune suppressants were stopped. Everyone received a short course of steroids. More blood was sampled when the participants were better. The steroid was allowed to wear off. The patients were followed closely with serial blood donations and they were instructed to return to clinic within three days if their symptoms came back. When a “flare” visit occurred, blood was drawn once more and then the patient was immediately treated.

Before this, almost everything known about biomarkers in lupus has been based on random samples of blood from biologically diverse patients on a cacophony of background medications. Now there is a freezer full of samples donated by patients where we can address biologic diversity by comparing the same patient with active disease on azathioprine (or the other immune suppressants) to themselves when they flare up without that treatment on board. This is how we can learn what the real impact of these agents on lupus is and how some of them, when they are allowed to be used during trials, could be interfering with certain drugs we are trying to study. In the past two years some preliminary data from the BOLD study has already been presented at the American College of Rheumatology (ACR) and the European League Against Rheumatism (EULAR) meetings. Now that the study is completed, the full reports will be out in the next year.

It is well known that lupus patients can be sorted into two major groups, those with inflammation that seems strongly influenced by interferon alpha and those with a much lower interferon influence. The preliminary abstracts that have already been released from the BOLD study are suggesting that many other factors that distinguish one patient from another, including the impact of immune suppressants, might be better understood by appreciating that they have different impacts on the interferon low and high groups. A better understanding of how to sort lupus into biologically meaningful subsets, and the biologic influence of background treatments on each of these groups may help to better design and interpret clinical trials as well as to inform better and more precise medical care for individual people in the future...not just for 50% of the people.

From the Motor City to Lupus Awareness Month

noreply@blogger.com (Sophie - LFA) — Tue, 23 Apr 2013 16:24:00 +0000

by Mary Crimmings, VP of Marketing & Communications

I’m able to get home to Michigan to see my family 2 times per year, usually around the holidays. When we connect in person it is time to relax, have fun and catch up on each other’s lives. During each visit my family learns a bit more about lupus as they ask me about my job and what I’m working on. But during my visit home earlier this month, the lupus stories and facts they’ve heard from me came alive when my family visited the purple lupus awareness bus. While on the bus it was the videos of personal stories from people living with lupus that touched their hearts and provided a true emotional connection to the disease. Their visit demonstrated that even those who have some awareness of lupus can gain better understand of this disease.

As you might have guessed, the reason for my visit home was not to see my family (although that was a bonus, especially meeting my new niece), I was in the Motor City for the Detroit stop on the Lupus Foundation of America’s Help Us Solve the Cruel Mystery™ National Tour. I was so pleased that Detroit was selected to be one of the cities selected for the first phase of this tour. And then after spending three days talking to metro Detroiters at the bus and the education program, I was filled with enormous pride for my organization and the teams who have worked so hard to make this program a reality.

Everyone I talked to mentioned how much they learned (including my dear friends who came out in the rain and snow to visit the bus). However, I continued to be struck by the many people we met at the bus who have a personal connection to lupus but, as our research revealed, really don’t know much about lupus beyond the name. And I was heart-broken to hear too many stories from people who lost a loved one to this cruel disease.

The weekend was affirmation of our work and that we must continue to connect to people with lupus and provide them with the latest information on the disease, and we must continue our efforts to gain better public understand of lupus. It is with greater awareness and public support of this disease that we will be able to secure more funding for lupus research.

My trip home to Detroit has given me renewed energy to continue the fight on behalf of the millions of people affected by lupus. And I’m excited about the many activities and opportunities we ALL have in the coming months through Lupus Awareness Month and the National Lupus Advocacy Summit to secure greater awareness and understanding of lupus – the cruel mystery.

Those who have a connection to lupus hold the power to make the greatest impact for others to understand this disease through personal stories of how lupus has affected their life! So as we look though our closets to wear purple (the color for lupus awareness) during Lupus Awareness Month, let’s not forget to also start the conversation about lupus. Asking someone a simple question such as, Have you ever heard of lupus? or Do you know someone with lupus?, opens the door to share a fact or story about the disease, invite someone to sign the petition to Congress asking for more lupus research, and engage others to join the fight against this cruel and mysterious disease.

I’m working on my own personal lupus awareness month outreach plan – how about you?

Getting Help is Closer Than You Think

noreply@blogger.com (Sophie - LFA) — Thu, 11 Apr 2013 22:05:00 +0000

by Christine John-Fuller, President and CEO of the Lupus Foundation of America North Carolina Chapter

Christine John-Fuller (right) with volunteer Tameka Joyner at the 2011 NC Lupus Summit

The Lupus Foundation of America has an ambitious goal: Improve the quality of life for all people affected by lupus. The cruel mystery of lupus does not daunt us. Our role is to help everyone with lupus be informed, engaged, and hopeful. We work to improve the lives of all people affected by lupus.

For those that don’t know, I have the greatest job on the planet as the President & CEO of the Lupus Foundation of America, North Carolina Chapter. Currently, I am finishing the last leg of an eight-city NC Lupus Town Hall Tour. In every city we’ve held a meeting, one comment from the audiences keeps getting voiced, “Please tell me about the support available to me here in my area.” And after more than two years of work towards expanding to a statewide chapter, I’m excited to share with them all we have to offer and can do to help. This list is extensive and many times they respond in surprise not realizing all the ways we can offer hope and help.

But this question is not unique to North Carolina, it is the same question that individuals affected by lupus ask across our country. And too many times, those who need help the most don’t truly understand how we can help. So allow me to break it down for you.

We not only fund research – we serve those living with lupus NOW.
In our pursuit of solving the cruel mystery of lupus with better treatment options and ultimately a cure, we also know that we have people who are confronted every day by lupus’ brutal impact, and we are the only national force devoted to doing so.

Regardless of where you live, we are here to help you.
No matter where you live in the United States, there are services established to help you. The Lupus Foundation of America National Network is composed of chapters, offices, and support groups in communities throughout the United States. But don’t make the assumption that too many individuals make. Just because there isn’t a physical office in your hometown, doesn’t mean there isn’t help out there for you. Think of it this way, could we possibly even afford to have an office in every town across America, OR would you rather we pool our resources so we can offer more services to more people, like you, that need help? Our network provides information and programs to ensure people with lupus and their families get answers. I encourage you to contact your closest chapter today to see what they may offer in your area.

No office close to you? No problem.
Did you know we have National Health Educators that are here to serve you? If you don’t have a local office, the Lupus Foundation of America Health Educators are available to take your call and help with whatever your need may be.

We are on this journey with you.
From discovery of symptoms to diagnosis to managing life with a chronic disease like lupus, we are on this journey with you. We know that lupus affects more than just the physical, it can have emotional, relational, and financial implications as well. We want to be the fourth cornerstone in the foundation of your support, with the other three being you, your healthcare team, and your caretaking team. Together, you are better equipped to handle anything that may encounter along the road…no matter whether yours is a rural dirt road in NC or a bustling metropolitan boulevard. We’re always here to be your traveling partner.

Guest Blog: For You, Mom

noreply@blogger.com (Sophie - LFA) — Wed, 10 Apr 2013 19:57:00 +0000

by Jan Angilella

Jan from Cincinnati

My mother was diagnosed with lupus in the 1960s. But it went dormant for many years, with no outward symptoms. It wasn’t until the late 1980s that she started having more serious health issues and then it snowballed. I remember telling friends about the disease and was often met with the question, “What’s lupus?”

When I saw the presentations inside the Help Us Solve the Cruel Mystery™ tour bus last week, I knew that so much progress has already been made just in awareness alone. This is an insidious, mysterious disease that needs more attention and more research to find a cure. That’s why I signed the petition to Congress asking for their support in funding research for a cure as well as safe, tolerable treatments.

I went through it with my Mom. She lived with the swollen joints, the dry eye and then the failed kidneys. I gave her one of mine in 2003 and her life changed after that. But lupus effects stick around. She still had bone issues, her feet were still swollen, she had to watch her diet – too much protein, not enough protein – and there was always fatigue.

I lost my mom in 2011 but her spirit lives on in me. There is a hole in my heart that will never heal, yet I am empowered by her life, her strength. And so I will help solve the cruel mystery that is lupus in any way I can. The bus tour is well done and answers a lot of questions about the disease. Let’s find a cure.

A Health Educator's Perspective: Sun Sensitivity and Lupus

noreply@blogger.com (Sophie - LFA) — Mon, 01 Apr 2013 16:25:00 +0000

Dawn Isherwood, RN, BSN

By Dawn E. Isherwood, RN, BSN,
Health Educator, Lupus Foundation of America

We hope everyone is enjoying the start of the spring season and the warmer weather!

Each year, as the flowers start to bloom and the weather gets warmer across the country, calls into the Lupus Foundation of America significantly increase with questions about light sensitivity. Two-thirds of people with lupus have increased sensitivity to ultraviolet rays, either from sunlight or from artificial inside light, such as fluorescent light -- or both. While we all know it is not possible, especially this time of year, to avoid ultraviolet light all together, for those living with lupus, it is important to protect yourself from these strong rays.

Photosensitivity or abnormal light sensitivity is a major symptom of the cruel and mysterious autoimmune disease we call lupus. If you are living with lupus, exposure to the sun can cause skin rashes. Beyond skin rashes that can develop, exposure to the sun, as well as artificial inside light, can cause increased disease activity with symptoms such as joint pain, weakness, fatigue and fever. This is not exactly the reaction we all want when enjoying the warm sun.

So why do people with lupus have this reaction to ultraviolet rays? Normally skin and other cells that are sufficiently damaged by ultraviolet light die through a process known as programmed cell death, or "apoptosis." The body then gets rid of the dead cells. Unfortunately for those who live with this devastating disease, apoptosis in the skin seems to occur more often than it should, which in turn leads to more inflammation and other side effects. People without lupus do not typically experience this reaction -- though too much exposure to ultraviolet light is not good for anyone.

Staying inside is not the answer -- you should all enjoy this weather. While it is difficult to avoid ultraviolet light all together, there are ways you can protect yourself. Here are some tips that I share with folks:

Avoid Mid-Day Sun
Whatever the weather, avoidance of tropical sun, or the sun in the middle of the day, is the first line of defense. This action alone may reduce the need for other treatments. Of course, avoidance of the tropical or mid-day sun may not be practical in all situations or for all people. If you must be out in the sun, broad-brimmed hats and tightly-woven, loose-fitting clothing with long sleeves and long pants are very effective.

Use Sunscreens
The use of sunscreens form the next and best-known part of sun protection. These preparations are either chemicals which absorb UV light, or pigments such as titanium dioxide or zinc oxide which scatter it. According to Dr. Andrew Franks, “right now, by far the best sunscreen on the market today is Mexoryl™, which blocks both UVA-1 & 2 rays in addition to UVB rays. There is more than one brand, so be sure the ingredient list includes Mexoryl. Products with the Helioplex® compound are close to Mexoryl in effectiveness and also protect against UVA-1 and 2 rays.”

Talk To Your Healthcare Provider or Pharmacist about Your Medications
Some medications may also increase the effects of the ultraviolet rays on a person's body. Antibiotics such as tetracycline or sulfonamides, some diuretics as well other medications have an increased potential of developing "phototoxic" reactions, such as easy sun-burning. If you are taking these "photosensitizing" medications, you will need extra protection against sunlight. Ask your doctor or pharmacist if any of your current or new medications might make you extra-sensitive to the sun.

Avoid Other Sources of UV Light
Sources of UV light other than sunlight can also cause skin problems in lupus. Thus, photosensitivity has been reported from fluorescent tube lights, which mainly emit UVA with small amounts of UVB, and from photocopiers, which emit mainly UVA and visible light. Fluorescent tubes can be fitted with acrylic shields which eliminate UVB emission, while photocopiers should not be used with the top cover up.

Install Light Shields on Windows
Finally, because car and house windows protect just against UVB, not UVA, and clouds only a little against either one, sun protection should not be limited just to sunny days. For windows, effective UV-blocking films are commercially available.

At the Lupus Foundation of America, we want everyone to enjoy the warm months ahead, and hope you find these tips helpful. We invite you to call one of our health educators if you have any questions. You can also visit the Lupus Foundation of America’s website at lupus.org to learn more about photosensitivity and lupus.

**
Dawn E. Isherwood, RN, BSN, is Health Educator for the Lupus Foundation of America. Dawn can be reached at 800-558-0121 or by filling out this contact form.

Act now to reduce lupus medical costs and improve access to treatments

noreply@blogger.com (Sophie - LFA) — Fri, 15 Mar 2013 18:21:00 +0000

By Kimberly Cantor

Kim Cantor

New medications and those in development to treat lupus are mostly biologics – a type of drug derived from living cells that are extremely complex to create. With a number of new and innovative treatments for lupus in the drug pipeline, these highly anticipated treatments will mean nothing if people with lupus cannot afford them.

Placing vital, life-saving, yet expensive medications used to treat chronic diseases and conditions such as lupus on a “specialty tier” is becoming common practice among health insurers. Medications on the specialty tier are typically biologics and are highly specialized drugs with few generic or therapeutic equivalents.
Under a specialty tier, patients are required to pay a percentage of the cost of the drug or a coinsurance. Traditionally, health insurance plans charge a fixed co-pay (i.e. $10, $20 or $50) for the different tiers (i.e. Tier I, II, III) of medications. However, coinsurance rates range from 25 percent to 33 percent at times, costing patients hundreds if not thousands of dollars each month and resulting in extremely high and burdensome out-of-pocket costs for patients.

The use of coinsurance and the specialty tier is becoming more prevalent in insurance benefit design as companies look to control costs and drive enrollees onto cheaper generic drugs. The problem is that in many cases there are no generic alternatives and co-insurance is causing many people with chronic diseases and conditions to underutilize treatments or go without treatment at all.

Specialty tiers are fundamentally unfair and discriminatory. And the practice imposes a significant cost-sharing burden on patients who rely on these highly-specialized drugs. That is why the Lupus Foundation of America is a founding partner of the Coalition for Accessible Treatments (CAT). CAT is a coalition of 18 national patient and provider organizations working together to address the problems created by the use of co-insurance and specialty tiers. In 2012, the Coalition successfully worked with Representatives David McKinnely (R-WV) and Lois Capps (D-CA) to introduce the Patients’ Access to Treatments Act (PATA).

PATA seeks to end the practice of discriminating between medications with a fixed co-pay and specialty tier drugs by requiring commercial health insurers to impose the same co-pay obligations for specialty drugs as they do for tier III medications. Our goal is to increase access to these important drugs and reduce the excessive cost-sharing obligation – paying a hefty coinsurance.

The Foundation is excited to working with the CAT again this year, and we were thrilled to have our Congressional champions sponsor PATA in the 113th Congress. On February 4, PATA (H.R. 460) was re-introduced. To date, 29 Representatives have co-sponsored the bill. We are working diligently to ensure a companion bill is introduced in the Senate shortly.

While not everyone with lupus experiences the challenges associated with accessing drugs on the specialty tier, many routinely experience paying a co-insurance associated with a medication or infusion, and high costs associated with taking multi-medications. Lupus activists can help curb the practice of co-insurance and specialty tiers.

We need your help! Please take a moment to e-mail your Representative today and ask them to co-sponsor PATA (H.R. 460). PATA will help reduce the cost-sharing burden on people who rely on highly specialized medications and help them avoid becoming more seriously ill or disabled.

Lupus activists from across the country will be asking Members of Congress to support PATA during the National Lupus Advocacy Summit June 24 and 25 in Washington, DC. By encouraging your Representative to co-sponsor PATA, you are helping build awareness for the issue and supporting lupus activists who will be on Capitol Hill this summer. Thank you for your activism.

Guest Blog: Sunny With a High Chance of Happy Tears

noreply@blogger.com (Sophie - LFA) — Wed, 13 Mar 2013 21:15:00 +0000

by Michelle Shuman

I can so clearly remember the excitement one Friday afternoon when the elderly community that my mother-in-law lived in finally got added to the city bus line. There were balloons, food, music and the press was there to cover the excitement. The battle was not an easy one. The fight had been going on for years, and it was met with the proper amount of tears when the elderly residents loaded onto the little bus, with city representatives, and were taken on the commemorative route.

These same feelings are stirring in me this week as the Help Us Solve the Cruel Mystery Tour bus is making its way into town. It is not coming to give me a ride and increase my independence, it is more than that. I have been living with lupus for over 26 years and the journey has been a roller coaster of emotions. When I was first diagnosed it was frustration. How could I be so sick and no one know what was happening? This moved quickly into fear when I got the diagnosis of lupus, and started reading what I was actually dealing with; and accelerated into horror when I was spending more time in the hospital than at home with my family. The amount of medicine I had to take to keep me “well” was baffling. I was taking these drugs to help calm the lupus and its piggyback diseases. All of a sudden I was getting major side effects from the drugs that were supposed to help me. This is when confusion set in. What is this cruel disease that has taken over not only my life but that of my family?

I reached out to the lupus community, became a support group leader online, and joined the Lupus Foundation of America, DC/MD/VA Chapter. I had to do something to help people in my same situation; especially those going through those first terrible years. I work health fairs hoping to catch the person with all the symptoms that just doesn’t have the doctor that has yet put them together. I raise money for the Walk to End Lupus Now so that we can support research for this disease that we so desperately need. I advocate for funding for lupus from our government both here in Virginia and in D.C., and I spend hours on the computer with people in need each week.

This week I am eager, eager for this big purple bus to arrive, this bus that holds within it all the mystery of lupus that I find so hard to make people understand. I want people to visit and learn what living with lupus is like. I want the general public to know my disease. It is important to me, I so want it to be important to them. I want patients with lupus to come to the bus and see that this bus is for us, that we deserve to be heard. I want everyone to come sign the petition for Congress to set aside funding for research for lupus. My emotional forecast for March 14-16th when the bus is in town: sunny with a high chance of happy tears!

Michelle Shuman is an active volunteer with the Lupus Foundation of America, DC/Maryland/Virginia Chapter. She resides in Richmond, VA.

Chris Wilcox: Scoring Points for Lupus Awareness

noreply@blogger.com (Sophie - LFA) — Mon, 04 Mar 2013 16:11:00 +0000

Boston Celtics player Chris Wilcox

Chris Wilcox, a forward for the Boston Celtics, is well-known on the basketball court. After being drafted by the National Basketball Association in 2002, he has played for several teams, including the Los Angeles Clippers and the Detroit Pistons. But for years now, Wilcox has also been working on another important goal behind the scenes: raising awareness and funds for lupus research.

Chris’s commitment to this cause began because of a family history of lupus. Two of his aunts died of the autoimmune disease, but the worst blow came when his sister, Tehesia, was diagnosed with lupus at the age of 17, while still a high school senior. Two of his cousins also have the disease.

Tehesia was prompted to get tested for lupus after she started to suffer from aching joints and skin rashes. After her diagnosis, her doctors determined that she also had kidney involvement.

“Lupus had already claimed my aunts’ lives, but nothing had prepared me for the sadness of seeing my sister suffer from this mysterious disease,” Wilcox says. “That, for me, underscored the need to raise lupus awareness and to someday find a cure.”

Tehesia, who says she consistently battles severe musculoskeletal pain and fatigue, says living with the disease is a daily battle for her—but it is one she manages to take in stride because of her family’s support.
“My brother has been my rock since the day I learned I had lupus,” says Tehesia Wilcox. “Even when Chris was just 10 years old, he was always there for me, asking if I was okay and if I needed anything. Now he uses his celebrity to bring attention to this disease. I am so proud of him, both for the tremendous work he does on the court and for those of us who live with lupus.”

Chris Wilcox is involved in several lupus education and fundraising efforts. Each year he organizes the Power Forward to Cure Lupus Golf Outing, an annual charity event that raises funds for lupus research. Last year, he and his wife, Tiffany, offered their support to walkers in Boston at the city’s inaugural Walk for Lupus Now™ organized by the Lupus Foundation of America. The walk, the largest of its kind, has been now renamed Walk to End Lupus Now™. The Wilcox’s supported Lexi’s Lupus Warriors, a team of 50 walkers assembled by Lexi Buswell that raised $13,000 toward lupus. Buswell, 11, was diagnosed with lupus in 2011.

Wilcox, who grew up in Whiteville, North Carolina, is also a supporter of the Lupus Foundation of America’s education program, the Help Us Solve the Cruel Mystery™ National Tour, which stopped in the Raleigh area over this past weekend.

In addition to his work with lupus, Wilcox – who says he never misses a chance to make a positive impact on his community—is working to spread awareness about heart disease. During a routine heart screening last year, team doctors discovered that Wilcox had an enlarged aorta. He underwent a complex surgery called the Modified Davids Reimplantation Procedure in March of 2012 and thankfully has made a full recovery. Since his surgery, Wilcox has teamed up with the American Heart Association to raise awareness about the importance of heart screenings and overall heart health.

“It’s important to keep pushing for change in the right direction,” Wilcox says. “Great things happen when you keep working and getting yourself better.”

Editor’s Requests for Summer issue of Lupus Now magazine

noreply@blogger.com (Sophie - LFA) — Mon, 04 Mar 2013 15:35:00 +0000

The Editor of Lupus Now® magazine needs your help with the Summer 2013 issue.

Ultraviolet light and lupus
Has lupus caused you to become sensitive to artificial indoor lighting? If so, we would like to talk to you. Write to us at lupusnow@lupus.org, with "UV" in the subject line. Please include a little bit about how UV affects you and how you cope, along with your name, location, and telephone number.

Lupus Blood Disorders
June is Antiphospholipid Antibody Syndrome (APS) Awareness Month. If you have lupus and APS, or if you have had other blood disorders due to lupus, we would like to talk to you. Write to us at lupusnow@lupus.org, with "blood" in the subject line. Please include a little bit about your history of lupus, along with your name, location, and telephone number.

Sisters with lupus
If you have sisters with lupus in your family, we would like to hear from you! Write to us at lupusnow@lupus.org, with "sisters" in the subject line. Please include a little bit about yourselves, along with your names, locations, and telephone numbers.

My View column
In recognition of National Inventors’ Month in August, what would you invent to make your life with lupus easier? Send your idea, in 30 words or less, to lupusnow@lupus.org, with "inventions" in the subject line. We’ll print as many as we can in the Summer magazine, and post the rest online at lupusnow.org.

Thanks so much—without all of you, there would be no Lupus Now magazine!

Lupus Now: Spring 2013 Preview!

noreply@blogger.com (Sophie - LFA) — Mon, 04 Mar 2013 15:33:00 +0000

Inflammation in the renal system is one of the most common complications of lupus. The cover story in this issue takes a close-up look at how advances in understanding and treating lupus kidney disease are changing lives.

Are you wondering exactly what the Affordable Care Act means for you? We look at coverage for people with pre-existing conditions, and more, in our story on health care reform.

Developing a new drug takes a lot of time and investment, and many willing participants—especially for a complex disease such as lupus. Follow along as the Foundation’s Medical Director discusses the process of clinical trials of potential lupus treatments and access to care issues.

Do you know the symptoms of an overactive or underactive thyroid? Get informed with our article on how a malfunctioning thyroid can affect you when you have lupus.

Don’t miss the stories in our Lupus Living section: tips on lowering stress, how a pet can help your health, choosing a legitimate online pharmacy, and ways to manage medication costs. Plus, in recognition of Lupus Awareness Month in May, find out what our readers want the public to know about lupus.

From the Foundation’s new call to action, Help Us Solve the Cruel Mystery™, to the 45-foot Purple Bus Education and Awareness Tour, you won’t want to miss a word of the Spring issue! Subscribe today!

Living by the Numbers by Mary Jane Goodman-Giddens

noreply@blogger.com (Sophie - LFA) — Fri, 01 Mar 2013 20:42:00 +0000

This post comes from Mary Jane Goodman-Giddens, a Lupus Foundation of America supporter and activist. She is a mother of six, two of whom are living with lupus. This has been reposted with permission from Mary Jane's blog about her son Ben's journey with lupus, Laugh By Laugh, Hour By Hour. To read more, please visit her website at bensstory.org.

January 29, 2013

Ben drove to school today. After the closing bell, he had to run to the hospital to have labs drawn, get chest x-rays and an EKG. I was taking care of my daughter’s almost four month old and the family agreed the baby and I shouldn’t float around various corners of the hospital with such a little one.

The reason for today’s visit was the first of many in preparation for a kidney transplant due to his fight against lupus nephritis. We were told Thursday a week ago he is being moved to the active waiting list, after being on the inactive list for a year. As well, Ben had moved from the children’s list to the adult list as he had turned 18 in December. With today’s lab results, the numbers regrettably looked more negative. They have remained fairly steady and this was an unwelcome surprise. With the move to the active list, it shouldn’t have been seen as one; it shouldn’t have been unexpected.

In some strangely faithful, yet apprehensive way, we have been awaiting this change in various measurements in his blood. The creatinine lab measures, basically, kidney function. A good (read normal) number is 1.1 or 1.2 and below, depending on the laboratory used. Our son has lingered in the 2.0 – 4.0 area for a few years. I speak specifically of this number as it reflects the condition of the organs directly affected in our son. When he first became ill the numbers were higher; he at times was fighting for air. For a multitude of reasons related to the severe kidney damage and dangerous meds taken to avert more damage, he went through periods when he was consciously working, struggling, to breathe. A number of factors led to these episodes. His lupus attacked his kidneys very violently. As a result, his blood was not cleaned by the damaged organs and certain electrolytes built up in his system causing the notorious edema (fluid buildup) and dangerous cardiovascular problems including long-lingering high blood pressure. Frightening seizures and a slew of other issues ensued. Due to his several rounds of chemotherapy, which saved him by knocking the lupus attack off its feet, his immune system was in very poor shape. Infections periodically took over his body. Shockingly at one period throughout his ordeal, his white blood cell count dropped to an horrendous low, near zero. His absolute neutrophil count was near zero. Our Ben was terribly close to dying. As he laid in his PICU bed, in an induced coma of sorts, I had to say goodbye to him. I don’t think I actually comprehended what everything and everyone was saying to me. I didn’t want to comprehend. I tried to trick myself and deny the truth, though deeply inside I knew what was close and very possible.

I had kept up with the daily labs, the every several hour blood pressure reads, the input/output of urine, the amount of fluids he consumed and I tried to learn as much as I could about this disease and other autoimmune diseases. I recorded everything, most likely to an extreme. Gene, my husband, held me as I cried at his cumbersome bed, as did my tearful daughters. They were on either side of me as we walked through the PICU; all nurses and staff there at the time turned and watched us leave through the strictly watched doors. In some regards it did feel as a funeral procession with guards turning towards the grieving family as they move through a cemetery lawn.

I do not know how Gene stayed strong. I was not privy to all he knew as a doctor. The words “he might die” were not spoken aloud. Gene was protecting me, though somewhere I knew and feared the worst was to come. He drove two hours back up the road to take me to be with our other children. This drive was the most surreal I have ever taken. Then he had to drive back alone, with his thoughts and fears.

What had taken place and brought him up to the PICU once again I have trouble revisiting. My husband and I have spoken of it often, but I cannot delve too deeply, nor for too many minutes.

Benjamin had been in the Pediatric ICU. His overall health, relative to others in the PICU, was seemingly much better. This is how lupus and other autoimmunes can look to an outsider. He had been in trouble with extremely elevated BP and infections. The pediatricians covering the ICU that week believed him safe enough to go down to a regular children’s ward, 7B. Ben was extremely alert, though it was clear he was having difficulty breathing. He was retracting just as I had seen one of his brothers do when this brother was rushed to Kapiolani Hospital in Honolulu. In both situations it was surreal and horrid to watch. It was a difficult scene in which to be a part.

Ten years prior to Ben’s steep fall from health our 2 month old, his brother Isaac became ill. At birth, Isaac was premature and not breathing. My OB left my side at delivery as they were using a “bag” to force air into his tiny lungs. Once we took him home from the hospital, though small, he was healthy. Two months later he began struggling again to take in air and I called 911. He was retracting. It is a bit like looking at a child sucking in his stomach to see how far he can. I remember seeing little Isaac on our kitchen counter on Aukai Avenue with several first responders, firemen with all gear on, leaning over him. After an ambulance ride with his oxygen saturation level hardly above the eighties, Isaac had a brief stay in the hospital. Once the sat level returned to normal, he was released.

As all mothers, I desired to believe this was as horrific as life would get raising a child.

Ben was very conscious during his struggle. Very alert he was at this time. As a mom, I had thought he shouldn’t leave the PICU. I didn’t want him to leave the PICU. After his bed was wheeled down two stories, our son was placed in a room on the ward in which we sadly felt more than at home. Very quickly he went downhill. His struggle became more and more obvious. On this particular ward I had fallen for the nurses as caretakers. We knew many and we felt at home with them, as much as one might possibly feel at home in a childrens’ hospital ward. Ben had been there that long. What took place on this evening was something several nurses seemed not to have witnessed before this.

To describe this is difficult. This is the time period I stop short of visiting fully. I take incomplete glances and when I do I see little. I do see his eyes. I do see a sea of uniforms. I do see the male nurse standing at the back of the bed holding and adjusting Ben’s mask. That is all I can handle.

Ben’s breathing became much more labored. He showed fear. On this particular ward, his struggle was not common. Gene and I looked at each other in an unspoken language that said more than any spoken language could. He was frightened. Gene, a neurosurgeon and a worried father, had to call for help, stat. I will never forget his stance and his loud call down the ward to the nurses station. Thank God we have him. I don’t think he will ever grasp the pride and gratitude I hold for him. As nurses ran, pulmonary moved in to give him oxygen, Ben’s eyes showed so much fear. They were large and rounded as he struggled and looked deeply into mine. He said at least once, “Mom, I am scared.” It was very difficult not to show my fear when crouching beside him as he spoke those words. I am sure I failed.

When not at his side, I was pacing. Gene too. Though so many were over him, around him, working and trying to figure out next steps, and some staff simply watching the emergency unfold, I have never, ever felt so utterly alone, so completely helpless. I never have felt so paralyzed, yet frantic. Never have I cursed God, any and all gods, and begged God all in the same moment before then. I could do nothing to help him breathe. I could not lift the car off of his body.

It has taken me four days to write of that specific time during this cathartic exercise. I have waited about five years to write this piece at all. I have skipped around in this story, jumping ahead in time and back again to avoid addressing those awful few days. Difficult to write, difficult to live through, but I still have him. Some people do not understand that autoimmune diseases, such as lupus, can be deadly and often are. It seems that they can be seen by some not familiar as an inconvenience with minor aches and pains. This is actually quite far from the truth, though all those affected may have different systems damaged or stressed.

Eventually, after quite a few rounds of chemotherapy and high dose prednisone, the meds did halt the lupus’ attack. He eventually was deemed in remission, but the kidneys, we had been told, would work only slightly for five to seven more years. They have. They have with 15 or so meds daily filling in for what his kidneys cannot do alone, with countless adjustments. We have had some additional scares beyond the grand mal seizures of Pres Syndrome (Posterior Reversible Encephalopathy Syndrome) and high potassium levels. His seizures kept him in the hospital. His high blood pressure frequently kept him in the hospital in Charleston. Med management kept him in the hospital. The need for dialysis kept him in the hospital. An outrageously high creatinine level had him airlifted urgently to Charleston and we once again feared the worst. Through all of this and the biopsies and placement of ports, the heavy meds and immense swelling of his entire body, Ben remained a hopeful kid. He remained positive and couldn’t wait to go home. When we did, it never was for an extended period. In a matter of days we would return to the Medical University of South Carolina, a stellar hospital from which we lived only about 2 miles away when Gene was a med student and resident. Of course, Benjamin had days of frustration and moments of anger. Even still, optimism was the word of the day, the month and it all stemmed from him, though he knew he was seriously ill.

Carefully, and with much forethought, we slowly gave him more knowledge about his illness as did his doctor, his rheumatologist, Natasha Ruth. (She is a very special person to all of us. She and his nephrologist, Dr. Orak, kept him with us.) Ben was only 12 when diagnosed. We let him know lupus is a chronic illness that cannot be cured. He would live with lupus. LIVE being the operative word. Some children with him in the PICU, some children with him on the chemotherapy ward would not have the option of living many more years, or even months. I will always be in a strange awe of the parents that have watched their child suffer with sickness and have lost their cherished one. I do not know how they continue day-to-day. Through this experience, I indeed was gaining a small bit of insight into their lives, though I never was forced to go over the cliff. I never had to fall so far. Nevertheless, I was gaining insight into something no one wants to see or of which to learn.

The lupus numbers still have him in remission. The kidneys, however, are seeing their last days. Ben has indeed begun the climb up to the next branch on the tree. He may be scratched by the bark and small limbs, but he will be stronger and higher once he has finished the climb. Children weighed down by illness of any sort are often quite resilient and hopeful. At some moments they are seemingly weightless, not held down by sickness. My children have taught me so much about living, resilience, unwavering strength and rising above. They are my heroes. Gene and the doctors are my heroes. Ben is my hero.

If you, as a reader, feel any desire to help children with lupus, please share this piece to raise awareness of this insidious disease. Many will be grateful. My family and I will be grateful.

Solving the Cruel Mystery, One City at a Time: Dallas

noreply@blogger.com (Sophie - LFA) — Mon, 25 Feb 2013 20:54:00 +0000

By Tessie Holloway, Lupus Foundation of America, North Texas Chapter, President & CEO

Just two weeks ago the Help Us Solve the Cruel Mystery™ National Tou r rolled into the Dallas and Fort Worth Metroplex area. The theme “Help Us Solve the Cruel Mystery” helped increase public awareness of lupus and shed light on the brutal impact of lupus. Our Chapter had the opportunity to connect with new individuals seeking answers and support and talk with so many people who have been touched by the disease.

We began the tour at Hulen Mall in Fort Worth, made two stops in Arlington, continued to South Dallas, North Dallas, and ended near downtown Dallas, site of two education programs that were held for local physicians and lupus patients. People came to visit the “purple bus” from many corners of North Texas and as far as El Paso, such is the case of Debbie Hipolito and her family who drove more than 10 hours to meet others with lupus and to learn about our awareness and education campaign.

I met some amazing people who live with this chronic disease and can relate to each one of the messages displayed in the interactive bus. Those who did not know but the word “lupus” gained a deeper understanding of the seriousness and how those affected by the disease live isolated from the things many of us take for granted each day. Many more, were so glad to know the message was being delivered to the general public by our mobile billboard, the “purple bus”!, while radio and TV interviews attracted new interest from our community in support of those who suffer from lupus.

The general public was invited to demonstrate their support for people with lupus by signing a petition that asks Congress to provide more funding for lupus research and education services. It is wonderful to be part of the only national force devoted to solving the mystery of lupus, while providing caring support for those who suffer from the disease!

Rep. Jim Moran: An Advocate for People with Lupus on Capitol Hill

noreply@blogger.com (Sophie - LFA) — Tue, 19 Feb 2013 16:06:00 +0000

Congressman Jim Moran of Virginia has served 12 terms in Congress and has many legislative successes to his credit. He is a senior member of the Appropriations Committee and has been a champion of the environment, women’s issues, and veterans, among other causes. In recent years, he has also been one of the strongest advocates for people with lupus on Capitol Hill.

Last year, the Lupus Foundation of America helped create the first Congressional Lupus Caucus. Rep. Moran serves as one of the caucus co-chairs along with Rep. Tom Rooney of Florida, Rep. William Keating of Massachusetts, and Rep. Ileana Ros-Lehtinen of Florida. The Caucus has been working with the Foundation to ensure that all members of Congress understand the impact of lupus on individuals and their families, and actively support the advancement of lupus research and increased awareness of lupus among the public and health professionals.

“There is little awareness of lupus and its impact on an estimated 1.5 million Americans,” says Rep. Moran. “This disease, disproportionately affecting women, needs greater attention. Our goal will be to increase understanding of this chronic disease and examine ways to support researchers’ efforts to identify, treat and to hopefully one day find a cure.”

Rep. Moran’s connection to lupus is also a personal one: his daughter, Mary, has lupus. Both Rep. Moran and his daughter have been a welcome presence at Foundation events, including walks and the annual gala. Rep. Moran received the Lupus Foundation of America’s Distinguished Leadership Award during the 2010 Advocacy Day Luncheon in recognition of his support for people with lupus, and he has been honored at the Foundation’s 2009 and 2012 galas in Washington, D.C.

“Rep. Moran’s support is crucial as we move forward with our work to educate all Americans about lupus and bring more federal funds to lupus research,” said Kimberly Cantor, Senior Director for Public Policy and Government Affairs at the Lupus Foundation of America. “He has been one of the best friends to people with lupus on Capitol Hill, and we are encouraged by his efforts to spotlight this cruel mystery to the public and other members of Congress.”

Rep. Moran serves as the Ranking Member on the Subcommittee on the Interior and Environment and also serves on the Defense and Legislative Branch Subcommittees. He serves as co-chair of the Congressional Prevention Coalition, the Congressional Crohn’s and Colitis Caucus, the Congressional Animal Protection Caucus and heads the Task Force on Sovereign Wealth Funds, which was established to study issues surrounding sovereign wealth funds and their potential to affect geopolitics and the U.S. and international economies.

In the mid-1990's, he co-founded the New Democratic Coalition, a group of approximately 50 House Democrats committed to fiscal responsibility, free and fair trade, technology, and maintaining America's security and economic competitiveness.

Let’s Measure Our Progress by Education, Treatment Advances and Research, Not Ribbons

noreply@blogger.com (Sophie - LFA) — Tue, 19 Feb 2013 16:03:00 +0000

By Amy E. Kelly-Yalden

Amy Kelly-Yalden

I have been with the Lupus Foundation of America’s Southeast Florida Chapter as its President and CEO for two years but lupus has been in my life for decades. My sister and best friend, Erin, was diagnosed with lupus as a teenager, although like many people with lupus she showed symptoms for years before being diagnosed. We spent our lives not knowing much about this disease outside of what her doctor told us. There were no events or programs we could attend. No community to be a part of. Our family lived with lupus as best as we knew how. We all felt very alone, especially Erin. Hospital visits became a norm. Clinical trials searches became a part of her life, as she had exhausted the way too small list of treatment options that existed. She made it look easy. She graduated from college, became an Exceptional Student Education Specialist for Broward Schools, married, and had three beautiful boys. It wasn’t easy. Lupus isn’t easy. Four years ago this month, my sister and the mother of those three boys died from lupus complications at the age of 34. This disease turned my family’s life upside down for as long as I can remember, and it still does.

We aren’t alone. The difference now is that families who are embarking on their lupus journey have more treatment options, resources, and an organization like the Lupus Foundation of America to support them, advocate for them, and raise awareness, so that saying “I have lupus” doesn’t have to mean explaining that it isn’t contagious and yes, it is serious.

Shift - to move or cause to move from one place to another.

I have had the privilege to be a Co-Founder and Executive Director of one of the largest cancer organizations in the world. In a little over a decade I was able to play a part and witness a complete shift in the disease – from awareness to increased screening rates to the approval of just one to over a dozen treatment options.

In the last two years since I have been with the Lupus Foundation of America, I have seen and felt a similar shift in lupus. Can you? We are moving this disease from a place of little to no awareness, no drug ever specifically developed to treat it, and support and services that were lacking, to buildings being lit purple, buses touring the country as part of the Help Us Solve the Cruel Mystery™ National Tour, new treatment options being approved, more programs and services being offered, and more than two dozen companies studying potential new treatments for lupus.

We have branded the disease as the cruel mystery, and we have issued a call to action by asking people to help us solve it. This disease is cruel and it is a mystery. There is no cure. It looks different in everyone. There is no clear path. There is no end. The public doesn’t understand it, causing a lack of empathy. My sister was receiving the same treatment regimen at one time that my grandmother was receiving for cancer. My grandmother’s friends and neighbors brought food, offered rides, and sent cards and flowers. No one did that for Erin. After all, it was “just” lupus.

Every day, hundreds of people hard at work at the Lupus Foundation of America and in its network of chapters, and ambassadors across the country are working to change that mentality and shift the course of this disease. We will not accept inaction. Neither should you. It will take each and every one of you raising your voices and asking your friends, family, and colleagues to help us solve the cruel mystery of lupus.

A pink ribbon is not a unit of measure

I have heard many people in my nonprofit career get frustrated at the “pink ribbon parade.” I implore you to not compare our progress to the breast cancer movement. Every disease wants that type of awareness. I have seen too many get caught up in that comparison. Every disease is vying for an athlete to wear its color, a yogurt lid to have its symbol, and 30,000 people to show up for a walk.

Let us celebrate our progress by measuring where we have come from, rather than making the pink ribbon the unit of measure. For me, I measure it in the four years since my sister died. Since then we have had the first drug specifically developed for lupus approved and more drugs in the pipeline than ever before, funded research that is helping diagnose the disease and track its progression and activity, branded the disease to help the public understand it better, funded the first- ever pediatric lupus research program, lit up landmarks across the country purple, held walks uniting thousands in each community, created programs and services that help people living with the disease live better, and formed the first ever Congressional Lupus Caucus, to name just a few.

The roar of 1.5 million people and their loved ones is much louder than a few

Do we have a long way to go? Yes we do! But let’s continue to blaze this trail in the unique way that the disease itself is. Let us not sit, wish, and hope for the way “that” disease is positioned in the marketplace. Let’s all do our parts, like the volunteer who spends their day loading water and supplies on a truck before a walk; the young woman with lupus sharing her story of hope with a recently diagnosed college freshman; the newly married couple who attend Advocacy Day to ask Congress to do more just a short time after the wife was hospitalized due to a severe lupus flare; the man who attends a seminar and has an impromptu get-together with other men living with lupus; the mom who got her whole family to wear purple on a family trip to Key West for Put on Purple’s southernmost picture of the day; and the husband who attends a caregiver support group and shares how he has supported and loved his wife for decades by “slowing his roll.”

There are plenty of ways to get involved and make what we do now bigger and better. I urge you to come out to walk and to a seminar, sign the cruel mystery petition or visit the tour bus if it is making a stop in your town, join us on Capitol Hill in June, celebrate Lupus Awareness Month in May, get involved with your local chapter, or simply share your story. Ask those who know you to play a part and help us solve the cruel mystery.

I guarantee you that if each and every one of you reading this does more than you did yesterday, a year from now we will be adding much more to our list of successes -- a lot less people will feel alone with this disease, the general public will no longer need an explanation of lupus, lupus research will see increased funding and we will be enjoying our own purple parade in honor of all those living with lupus and in memory of those we have lost.

And one day…this disease won’t be as cruel or mysterious.

Amy E. Kelly-Yalden is President and CEO of the Lupus Foundation of America’s Southeast Florida Chapter