Living on the frontlines

Shop at the HPS Store

noreply@blogger.com (Heather Kirkwood) — Thu, 12 Nov 2009 01:28:00 +0000

As the holiday season approaches, don’t forget about the HPS store on the HPS Network Web site – www.hpsnetwork.org. Yes, our own store is up and running with HPS gear for that HPS’er in your life – grin.

For sale you’ll find the Christmas CD by “J” called Another Christmas. You can listen to clips on the Web site. It makes a great holiday gift.

Is your red “fighting for the cure” t-shirt getting a little faded? Pick up a new one online!

Or, maybe you’d prefer one of the newer polo shirts in pink or blue.

Lastly, there’s the red HPS umbrellas, perfect for rainy days or for providing a little instant shade on a sunny day.

You no longer have to wait for conference to stock up on your HPS favorites!

Focused on the $$$s

noreply@blogger.com (Heather Kirkwood) — Thu, 12 Nov 2009 01:10:00 +0000

Lately I feel as though I’m probably getting on everyone’s nerves. I feel like all I ever post about, either here or Facebook or on the listservs, is fundraising. If I’m sounding like a broken record, I’m sorry. I can’t help it.

This year is a special kind of year in HPSland.

Sometimes I look around at the needs in our community – the needs of our families, of those with HPS and of the Network – and it all seems overwhelming. How on Earth are we going to get it all done? I sometimes feel as though we’re barely scratching the surface and there’s so much more to do.

I feel like conference for many is going to be especially important this year. We’re all a little tender in the spirit from the closing of the drug trial. We need to be with our “family” to console one another in person as well as to motivate everyone to soldier on to the next phase of our journey. None of us can do it alone. We need each other.

We also need to have a strong turn out for conference to send the message to our researchers that we’re still here, we’re still strong, and we’re gearing up for the next stage. We need to show them by our spirit that we are not defeated and that we still love and appreciate them. We need to show them that our ranks are growing, and we need a cure!

Our Hundred People Search is going very well. We have so many new members, and they could benefit so much by the conference experience. It’s the best place to meet other patients as well as the doctors. For so many, it’s an experience that totally changes their perspective about their diagnosis. For the parents of smaller HPS’ers, it’s such a valuable educational experience that trains them to be better advocates for their children.

Despite all that we do to try to keep the cost of conference down, it still isn’t a cheap trip for most families. There’s hotel and airfare and incidentals. Most can’t do it alone. We never have enough funds to bring everyone together that needs to come.

Some families have fundraisers and the money they raise helps to bring them to the conference.

I’m trying to encourage others to ask for additional help from community organizations like the Lions Clubs. It would be especially helpful this year as our fall fundraising is down. Rain has not been our friend at several fundraisers.

I’m happy to even write a letter for you if you’re an HPS’er of CHS’er who needs help finding funds for conference. I want you there. I just need you to be willing to reach out and ask.

Holiday shop for the cure

noreply@blogger.com (Heather Kirkwood) — Tue, 10 Nov 2009 23:10:00 +0000

As the holidays get closer - trust me, they're coming - don't forget that you can holiday shop and benefit the HPS Network all at the same time. If you shop through the www.igive.com Web site, a percentage of your purchases will go to the HPS Network. The site has more than 700 stores such as Eddie Bauer, Expedia.com, JCPenny etc. You can pretty much find anything on your shopping list.

The drug trial – the final chapter

noreply@blogger.com (Heather Kirkwood) — Mon, 09 Nov 2009 21:49:00 +0000

It’s been a few weeks since this happened. I wasn’t as worried as I usually am about recording it “in the moment” because the film crew came to visit and filmed the entire thing.

Our trial of Pirfenidone came to an end and so after three years, I had the option of learning whether I was on active drug or placebo. My curiosity, of course, would have gotten the better of me – I had to know.

By the time the NIH was ready to tell me, however, I was somewhat resigned to being indifferent about the answer. Perhaps a coping strategy my subconscious had created – perhaps it really isn’t that big a deal after all – either way I was ready.

I had been worried that if I was on placebo, and had improved so much on my own, that the NIH would decide I was prone to the power of suggestion and decide I wasn’t a good research subject for future studies. The research is so important. I would never want to throw things off because of my own psychological baggage. The thing is I know in my heart I tried my utmost at every single pulmonary function test. Often I felt as though I might pass out because I blew on the tube with such gusto.

When the trial ended with no conclusion – and thus no opportunity to remain on the drug – my mind changed somewhat. I was worried that if I was on active drug, and that then that drug would be taken away, that I’d suddenly start to decline. Being on placebo suddenly had an upside – indisputable evidence that I was stable.

I warned the film crew that “the news” could be somewhat anticlimactic. They wanted to film it anyway, and I was happy to let them. It put a cap on this part of the HPS story.

So, in the midst of my apartment being at its messiest in years thanks to the study overhaul, the film crew arrived – Nicole, the producer, Joel the camera guy and Gabe, the sound person. I have to say I completely enjoyed a day hanging out with them. They’re just fun to spend time with!

Kevin called at the pre-arranged time. He was all business – and told me that indeed I had been taking a placebo for the past three years.

What was one going to say?

Things that make you go – hmmm…….

I really had thought I was on active drug. Although I had GERD before the trial, it had definitely been worse since the trial. I had a rash after being in the study about a month.

When the drugs were gradually introduced – one capsule a dose the first week, two the second week, and three the third for a grand total of nine a day – my stomach had gotten upset with each rise in dose. How do you do that without cause? It wasn’t just tummy cramps, it was outright severe runs.

I asked Kevin if there was anything about the placebo its self that might have caused this – maybe capsules that my tummy didn’t like – who knows. He assured me this was impossible. The placebo was simply made of essentially starch.

The cameras rolled as I began to call my HPS friends with the news. I called them first because I knew they’d understand any wacky thing that came out of my mouth – and that understanding bought me a little time to adjust.

We continued to film throughout the day and throughout the day there were various “wellness” checks on how I was feeling about things. Honestly, I was feeling relief.

That night I gathered some of my closest friends from the Kansas City area that had been supportive of HPS since my diagnosis. They’d all helped with fundraisers and emotional support. They all were also no strangers to chronic and serious illness. Everyone there had their own medical story to tell, if they’d been asked.

Tina J, who always has the best sense of humor, asked me if I still had a bottle of the pills in my “pharmacy” – what we call the backpack I carry with me at all times with my medications.

I did as it hadn’t yet occurred to me to take it out. I fumbled through the bag and plopped the now meaningless bottle in the middle of the table.

“Well, if they’re just placebos, we should all take one,” Tina J suggested, and everyone else agreed. We passed them around the table as if they were appetizers. I was slightly reluctant – I know the NIH had just told me they were harmless, yet somehow in my mind’s eye I saw Kevin frowning at this little exercise in comradeship. So much for Kevin……you can’t help but laugh at the scene.

My friends reminded me how tempted I’d been to cut open one of the capsules in the beginning of the trial to see if there was sugar inside. “Now that you know it’s a placebo, see what’s inside,” suggested Tina J, egged on by Tina B.

I opened one of the capsules and poured the white substance onto a restaurant placemat.

We all tasted it as if we were sampling something forbidden. Karen thought it tasted bitter, but I thought it tasted like flour.

Next the film crew wanted to film me following Kevin’s instructions to dump the pills down the toilet. We’d forgotten to film this back at my apartment.

The ladies room was too small for all of us, so we went to the men’s room. These poor men would come wanting to go to the bathroom, and we’d all have to pile out to let them go, and then pile back in again. I can’t help but wonder what the restaurant thought we were up to in there!

Joel filmed me pouring the pills into the toilet, and then he stuck the camera right down in the toilet bowl and filmed the capsules circling the toilet as I flushed.

Somehow it seemed like a symbolic ending.

Since then I’ve been asked a lot whether I’m angry that I was on a placebo all this time – after all – I did pay a high price to be in this trial. I changed life plans to be able to stay in the United States and participate in research. Missing work certainly was one (although one of several) death nails in my career.

The answer is no, I’m not angry. I knew going in there was a chance I’d be on placebo. I feel lucky that despite being on placebo, I’m doing as well as I am. Someone had to be on a placebo.

I also feel that if the trial was flawed in such a way that it would have not generated the answer we needed, than it’s better that it ended now and that research now focuses on something else. Otherwise, I really would have spent another three years on placebo for nothing.

Twenty years since the Fall of the Wall

noreply@blogger.com (Heather Kirkwood) — Mon, 09 Nov 2009 20:43:00 +0000

There’s nothing like the anniversary of a major historical event to make one feel old – not that I’m complaining mind you. Still, it’s hard for me to imagine that it’s been 20 years since the fall of the Berlin Wall. It’s even harder for me to listen to today’s news reports and realize there’s an entire generation of Germans who don’t even remember a divided Germany, or all that the Berlin Wall really meant to people on both sides.

The night the Wall fell my family was eating dinner at the Officers and Enlisted Combined Club at Garlstadt. The 8 o’clock news came over the Armed Forces Radio Network and announced the borders between East and West Germany were open. Not one of us said a word. I think each of us probably thought we’d heard the news wrong.

The truth is the Wall had been on its way down for months, but to us at the time, it was such an icon of the age, it was hard to imagine it would come tumbling down just like that. Only a few weeks before we’d been in East Berlin shopping. That weekend there was some sort of communist youth day in the capital and the city was swarming with young East Germans, all dressed in their school uniforms with the red ties. How could the Wall suddenly be breached?

The next morning, however, I awoke to the yelling of my mother calling me out of bed. The sun wasn’t yet up, but my mom, always an annoying early riser, was up and had turned on the German news. (We didn’t get American television where we lived.) While my German was never good, at the time it was better than my mother’s or Ryan’s, and thus my mom wanted desperately to know what was being said.

When I looked at the television screen, I saw thousands standing on the Wall in front of the Brandenburg Gate cheering and shouting and sometimes taunting the East German border guards. Some of the guards, by this time, had flowers hanging out of the barrels of their guns.

We were glued to the television for hours. We called friends and family back in the United States – not giving a care to the time difference – after all, this was history.

A week later an East German traubbie (East German car) was parked down the street. Our neighbors were reuniting with family they hadn’t seen since the 1950s. It truly felt like the world had been turned on its ear for the better.

testing, testing

noreply@blogger.com (Heather Kirkwood) — Mon, 09 Nov 2009 05:54:00 +0000

Because I've been so tired, I haven't really felt up to playing with my new toys. One of my new toys is a scanner. It's just your typical scanner, but I was a bit hopeful I could use it to scan in artwork and then apply the artwork to other things.

This is a watercolor I did that I wasn't very pleased with to be honest. I thought maybe I'd crop out the background I don't like and put it on a notecard as an experiment. Here's the scan though. It's okay, but the colors aren't as bright as they are in the actual peice of artwork.

I thought for the card I'd put on the inside, "Even when life brings rain, don't forget to stop and smell the flowers."

Health update

noreply@blogger.com (Heather Kirkwood) — Mon, 09 Nov 2009 05:52:00 +0000

This is just a brief update for record keeping. I think I need to go get some blood work done. My sleep patterns are all out of wack, but even when I'm awake, I seem to only be productive about five hours a day. I get up at a normal time and fall asleep at the table, or at my desk. I don't feel sick, although my asthma and joints seem flared up. I just feel overwhelmingly tired. That's partly why I'm so behind on blogging!

First round of craft sales makes nearly $100

noreply@blogger.com (Heather Kirkwood) — Sun, 08 Nov 2009 03:54:00 +0000

A big kudos to Karen T and Tommy for manning the season's first craft sale. This particular sale was held for non-profits only and was a first-time event, so hopefully it will grow next year and we'll be on the ground floor. Here are some pics Karen and Tommy sent.....way to go!

Low vision event of interest to New Yorkers

noreply@blogger.com (Heather Kirkwood) — Fri, 06 Nov 2009 01:32:00 +0000

I'm just posting this as a service to pass along.

SAVE THE DATE
Thursday, November 19, 2009

The Computer Center for Visually Impaired People (CCVIP) at Baruch College Invites You to a
Technology Demonstration on

Accessible Book Readers

Time: 7:00-9:00pm

Where: Baruch College , 17 Lexington Avenue (between 22nd and 23rd Streets, on the east side of Lexington Avenue ), Room 1220

What: Join us as we look at the options currently available for reading electronic books. We will be demonstrating devices such as the Victor Reader Stream, the BookSense and the new digital National Library Service reader. How do these devices work? What can they do? How much do they cost?

Admission: Free

Reservations: Call 646-312-1420

Thanks to everyone who joined us for the last demonstration in October. We look forward to having you with us again and to have many new faces in November.

If you are unable to join us in person, watch it on the web at the address below:

http://media.baruch.cuny.edu:7070/mediacenter/live/ccvip_demo.sdp

Also mark your calendars for Monday, December 14. We will be presenting a demonstration on portable Closed Circuit Television (CCTV) devices.

Intermune files for FDA approval for Pirfenidone to treat pulmonary fibrosis

noreply@blogger.com (Heather Kirkwood) — Thu, 05 Nov 2009 22:17:00 +0000

Below is a press release from Intermune, the company that produces Pirfenidone, the drug the NIH was studying to treat the pulmonary fibrosis of HPS. I thought HPS'ers might like to know that even though our study didn't reach a conclusion, Intermune is going ahead with the results from the IPF trial and seeking FDA approval.

That means that if the FDA finds the drug is safe, and if they are convinced the drug has beneficial effect after they review the data, the drug may be on the market in several years. HPS'ers may have some difficulty accessing the drug if it hits the market for a variety of reasons, but you can be sure that the HPS Network will work on that issue if the drug is approved.

In the meantime, I think it's hopeful that the drug has been submitted to the FDA.

Here's the press release:

InterMune Announces Submission of NDA for Pirfenidone for the Treatment of Patients with IPF

BRISBANE, Calif., Nov. 4 /PRNewswire-FirstCall/ -- InterMune, Inc. (Nasdaq: ITMN) today announced that it has submitted an electronic New Drug Application (NDA) with the U.S. Food and Drug Administration (FDA) seeking approval to market pirfenidone for the treatment of patients with idiopathic pulmonary fibrosis (IPF). Pirfenidone has been granted Orphan Drug and Fast Track designation by the FDA, and also has been granted Orphan Drug status in Europe.

"IPF is a rapidly and uniformly fatal disease. Sadly, there are no medicines approved for the approximately 100,000 Americans who suffer from this terrible disease," said Dan Welch, Chairman, Chief Executive Officer and President of InterMune. "InterMune has dedicated almost ten years to the development of new medicines for patients with IPF. We are very proud to have submitted the first NDA ever submitted to the FDA for a medicine to treat IPF patients."

About Pirfenidone
Preclinical and in-vitro evidence had shown that pirfenidone has both anti-fibrotic and anti-inflammatory effects. Results from three adequate and well-controlled Phase 3 studies have shown evidence of a treatment effect in IPF patients and the compound has been safe and generally well tolerated, with side effects including photosensitivity rash and gastrointestinal symptoms.

InterMune licensed pirfenidone from Marnac, Inc. and its co-licensor, KDL GmbH, in 2002 and in 2007 purchased from Marnac and KDL the rights to sell the compound in the United States, Europe and other territories except in Japan, Taiwan and South Korea where rights to the molecule were licensed by Marnac and KDL to Shionogi & Co. Ltd. of Japan. In October of 2008, pirfenidone was approved for use in IPF patients in Japan and is marketed as Pirespa® by Shionogi in that country.

About IPF
Idiopathic pulmonary fibrosis (IPF) is a disabling and ultimately fatal disease that affects approximately 200,000 patients in the United States and Europe combined, with approximately 30,000 new cases reported per year in each of the United States and Europe.

IPF is characterized by inflammation and scarring (fibrosis) in the lungs, hindering the ability to process oxygen and causing shortness of breath (dyspnea) and cough and is a progressive disease, meaning that over time, lung scarring and symptoms increase in severity. The median survival time from diagnosis is two to five years, with a five-year survival rate of approximately 20%. Patients diagnosed with IPF are usually between the ages of 40 and 70, with a median age of 63 years and the disease tends to affect slightly more men than women. There are no medicines approved in the United States or Europe for IPF.

About InterMune
InterMune is a biotechnology company focused on the research, development and commercialization of innovative therapies in pulmonology and hepatology. InterMune has an R&D portfolio addressing idiopathic pulmonary fibrosis (IPF) and hepatitis C virus (HCV) infections. The pulmonology portfolio includes pirfenidone for which InterMune has completed a Phase 3 program in patients with IPF (CAPACITY) and has submitted a New Drug Application (NDA) to the FDA. The hepatology portfolio includes the HCV protease inhibitor compound RG7227 (ITMN-191) that entered Phase 2b in August of 2009 and a second-generation HCV protease inhibitor research program. For additional information about InterMune and its R&D pipeline, please visit www.intermune.com.

Forward-Looking Statements
This news release contains forward-looking statements within the meaning of section 21E of the Securities Exchange Act of 1934, as amended, that reflect InterMune's judgment and involve risks and uncertainties as of the date of this release, including without limitation the statements related to anticipated product development timelines, the interpretation of the CAPACITY clinical data, including certain exploratory analyses conducted by the Company with respect to such data and the likelihood of regulatory success. All forward-looking statements and other information included in this press release are based on information available to InterMune as of the date hereof, and InterMune assumes no obligation to update any such forward-looking statements or information. InterMune's actual results could differ materially from those described in InterMune's forward-looking statements. Pirfenidone failed to achieve statistical significance on the primary endpoint in one of its two pivotal clinical trials and there can be no assurance that the regulatory authorities in either the United States or Europe will grant regulatory approval based upon these data, in combination with the other efficacy analyses and safety results the company currently intends to submit in support of its NDA and MAA filings. Factors that could cause or contribute to such differences include, but are not limited to, those discussed in detail under the heading "Risk Factors" in InterMune's most recent annual report on Form 10-K filed with the SEC on March 16, 2009 (the "Form 10-K") and other periodic reports filed with the SEC, including the following: (i) risks related to the long, expensive and uncertain clinical development and regulatory process, including having no unexpected safety, toxicology, clinical or other issues or delays in anticipated timing of the regulatory approval process; (ii) risks related to failure to achieve the clinical trial results required to commercialize our product candidates; and (iii) risks related to timely patient enrollment and retention in clinical trials. The risks and other factors discussed above should be considered only in connection with the fully discussed risks and other factors discussed in detail in the Form 10-K and InterMune's other periodic reports filed with the SEC, all of which are available via InterMune's web site at www.intermune.com.

SOURCE InterMune, Inc.
Jim Goff of InterMune, Inc., +1-415-466-2228, jgoff@intermune.com

HPS'ers in New England get together

noreply@blogger.com (Heather Kirkwood) — Wed, 04 Nov 2009 06:44:00 +0000

Here are some photos from a gathering of HPS'ers and their families in New England. Thanks, once again, to our favorite photog, Frankie the Cat! There is a lot of interest in organizing future events in the New England area. I think I've heard rumors about a possible Christmas party. If you have interest in these events, let me know and I'll put you in touch with Carmen.

More pics from the MGM visit

noreply@blogger.com (Heather Kirkwood) — Tue, 03 Nov 2009 23:21:00 +0000

It’s been a year

noreply@blogger.com (Heather Kirkwood) — Tue, 03 Nov 2009 02:27:00 +0000

Oct. 15th was a big anniversary – it’s now been a year since I left work. A year ago I was such a mess that looking back it’s hard to imagine that the person I am today, and the person I was then, are one and the same.

A year ago it was hard to blog about what was going on, both because of the emotional rawness of it, and because I was in the midst of dealing with all the legal aspects that come along with filing for disability. It isn’t that I have any secrets, but sometimes when you’re not sure if you’re saying too much, it’s better to say nothing at all.

Last year Oct. 15th was on a Thursday. I put our weekly e-newsletter to bed, packed up my few office belongings in some boxes, and left. I had only made up my mind to leave my job a few days before. It was, however, something that was long in coming – something that creeped along becoming more necessary by the day for years. And when it finally happened, even though it was scary, it was an incredible sense of relief.

I had always thought that when I finally had to leave the traditional workforce, I’d be “sicker” than I was. I thought I’d be pulling an oxygen tank and relocating to a lung transplant center when that fateful day arrived.

The truth is managing all the minor aspects of my HPS became a major job. Had it only been one thing, I would have surely been able to keep on for longer. Instead, it was the mix that did me in.

For starters, my ostomy issues were becoming more frequent. For more than a decade I lived with an ostomy with “incidents” occurring maybe two or three times a year. I suppose that as the skin has aged, and perhaps become more fragile, the problems became more frequent. I should have perhaps asked for more “reasonable accommodations” in the way of bathroom facilities at work, but to be honest, I felt as though asking for such measures would obligate me to the company for some time. The industry was (and still is) going through difficulties. I hadn’t had a raise in years. Finances were increasingly tight, and I didn’t want to feel as though I had to stay should another opportunity come along. Maybe right – maybe wrong – it’s just how I felt.

The other problem, which would have been difficult to continue to contend with in the workplace no matter what the facilities were like, is that my bowel seemed to be getting increasingly finicky. It wasn’t as bad as it was when I was in college mind you, but sometimes when your stomach is upset things happen rapidly and it isn’t always easy to respond in time. I’d find myself with fecal material on my clothes – very humiliating.

If I was able to drive, a short drive home would have allowed me to change and be back at work before I was even missed. Because I can’t drive, however, I found myself in these delicate situations compounded with sometimes having to wait for over an hour for a cab. And once home, the process had to be repeated.

It got so I was headed home early at least once every week. I’d, of course, continue working from home – but sometimes in corporate life it’s all about perceptions. Even if I worked many extra hours to make up for the time lost, the inconvenience of having me leave in the middle of the day wasn’t easily forgotten or overlooked by anyone, even if they were too polite to say so.

I can’t blame them. There was a job to do and my issues were increasingly getting in the way.

Another problem was joint pain. My joint pain is rarely severe, but there are days when it can be distracting. My fingers and ankles are usually the worst. Considering that my job required me to use the computer and type for eight to 10 hours a day, there were days it was very hard to keep up.

Another problem that creeped up over time was my cycles. In my 20s they hadn’t been much of a problem, but as I got older they became quite the problem. My bleeding would be so bad that I’d miss a day or two of work because I would be in bed with cramps and bleeding that prevented me from leaving the house. I took measures to correct this problem – and now it isn’t much of a problem at all – but it’s back to perceptions. It took over a year to try different methods to correct the problem. By the time we hit upon the right one, the damage had been done.

And then, of course, there was the drug trial. Like most Americans, my job’s vacation time might have seemed generous if nothing was wrong. But year after year I spent at least three weeks at the NIH. Even when the NIH cut down the length of admissions, the travel time still required me to spend about a week of working days to participate in the drug trial at each admission. That meant not only that I never had sick days or vacation days to deal with my other problems, but I also never really had a break – a vacation – a chance to unwind. It was a situation that would likely drag on for year after year and it began to take a psychological toll.

Fatigue was another huge issue for me. There are many nights when because of ostomy troubles, or upset stomach, or acid reflux or join pain – I simply didn’t sleep well. Sometimes I just don’t sleep at all. It’s like constantly having jetlag without the benefit of international travel.

There are days when it was truly a battle to stay awake and alert enough to do my job. There were other embarrassing days when my colleagues would find me asleep at my desk.

Then there were the routine doctor appointments. The more I struggled to manage all of this, the more problems I developed. My blood pressure went sky high. My moods became problematic. The list goes on – and so did the doctor’s appointments to keep everything in balance and check. Again, even though the doctor visits were mostly minor and routine, because I didn’t drive they would often take the better part of a work day. There was no going to the doctor over my lunch hour like everyone else did.

And when something would come up, such as the skin infection I picked up from a hospital-borne bacteria, then the pressure was even that much more.

Lastly, my psychie was falling apart.

I felt like I was failing at life. I felt like I couldn’t keep up with anything or do anything well. I felt constantly overwhelmed, as though I was just trying to keep from avoiding the next disaster.

Pressure increased at work. Everyone – not only in our office but across the industry – had to do more with less. We all had to put in longer hours, most of which went undocumented. We were all concerned with keeping our jobs – me most of all.

I am single and my life revolves around my health insurance. I literally felt like my situation at work was a matter of life and death. As a result, when things were difficult, or when I was struggling, there was an added layer of anxiety.

Throw into the mix the usual pressures that go along with living with a chronic condition like HPS. It’s fine if it doesn’t impact your health much. But, if it does it comes with a whole other layer of psychological stuff.

I know I could have gone about my business with little if any involvement in the HPS Network, but to be honest, the work I was doing for the HPS Network was like medicine for me. It’s the one thing that made me feel like I had some power, some ability to take action against this syndrome that I knew would slowly eat away at my life.

Because HPS is so rare, in order to have hope I felt I had to take action. There was no one who would simply step in to do the things I was doing if I bowed out and stopped.

Choosing to be involved comes with its own set of issues. Having support thankfully also means giving support. I find a lot of meaning in doing that – but when people that have become your friends start to pass away, it isn’t easy. It isn’t easy to watch whole families deal with the mortality associated with HPS – to watch one sibling with HPS watch as another passed away – knowing full well in a matter of years it would likely be their fate as well.

I’d watched and I felt like I was looking at my future. The only way for me to cope was to get even more involved.

Eventually, these two worlds – my HPS world and my work world – were on a collision course. And finally, they collided. Finally it all just became too much to bear.

I’m not sure if what happened to me last year would classify as a nervous breakdown – but if not than it was something close.

I started having panic attacks on the bus on the way to work. Sometimes I’d have to get off the bus and wait for the next one because I would feel so ill – as though my heart were racing, my chest tight and my throat dry. I’d get to work and suddenly I hated riding elevators. It would feel as though the walls were closing in. If the elevator was full, it would feel as though the other people in the elevator were sucking up all the air.

I found that I was very jumpy at work. I was easily startled by things. Little noises have always annoyed me – even when I was a kid – but suddenly this hyper awareness of sound was worse than ever.

I sought the advice of several therapists, and was told by all of them that I had post traumatic stress syndrome (PTSD). To be honest, it was a diagnosis that I still somewhat question. You know me, I read up on PTSD and what I experienced was similar, but not exactly the same, as what I read about victims of violence or soldiers coming home from war. Whatever you want to call it, however, it was yet another contributing factor to the end of my “traditional” working life.

In my last days at work my short-term memory became problematic. I’d edit a paragraph and five minutes later couldn’t remember what I’d read. That, of course, only contributed to the anxiety.

When I left I had a list of “goals” I would achieve while I rebuilt my life. Truth is many of those goals remain untouched. It frankly took months just to psychologically heal from the entire experience. It took many more months, and hours upon hours, to work my way through filing for disability, dealing with insurance carriers, social security, Medicaid and vocational rehabilitation services.

This is part of the problem of even thinking about now returning to a “traditional” job again. While I am doing much better than I was a year ago, that could change at any time. The next time, however, I likely won’t be able to make a claim with private insurance. It also would mean going through this jungle of forms and rules and laws all over again – and the year that it takes to do all of that. Finally, there’s the insurance issue.

This is the last month I will have private insurance. After the economic stimulus package help runs out this month, I can no longer afford $400 plus for premiums, plus the approximately $700 of co-pays a month (and that’s if nothing goes wrong.)

I will soon be on Medicaid. The trouble is Medicaid in Kansas is very limited in what it will cover. Thank God I don’t currently need a drug like Remicade as that would be a battle here. The last time I checked lung transplants are also not covered by the Kansas Medicaid program.

I feel that for my own protection, I must become eligible for Medicare – not perfect coverage and it still requires a supplemental policy – but it does cover lung transplants and I can more easily take it from state to state.

As I get older, and the chances of my lung health declining increases, I’m too afraid to be at the whim of corporate insurance. It would be too easy to find myself out of work for reasons relating to my health – or in this economy – for an employer to simply go belly up leaving me uninsured with a huge pre-existing condition.

Health care reform may help some of these problems, but frankly, right now it’s hard to say. And even if the bill in Congress gets through and does offer relief, it won’t take effect for several years. In the life of someone with HPS, several years can mean drastic changes in health status.

So, for now, I’m doing what I have to do and that doesn’t always square up with what I feel my duty to society equals. I must remain on SSDI for now to ensure future coverage. That limits what I can earn.

Voc rehab has worked out well and set me up with a home office. I hope to make what I’m allowed through a combination of freelance or contract jobs. It will take some time to build up the business.

Yet, in a strange kind of way, it’s been liberating. You can choose how to look at things in life and whether to find the up side or the down side. This isn’t the way I wanted my life to turn out. On the other hand, when I was working my standard of living wasn’t too much different than it is now. I often felt like I was working just to pay to exist – not to thrive. I felt like I was working just to pay for my demise.

Now I have a bit of an attitude about the whole thing. Maybe not the best attitude, but it’s how I feel. I didn’t create the rules I’m forced to live under. But, as without a six figure salary it seems highly unlikely I’ll ever achieve any sort of financial security, I might as well do what makes me happy.

Not being allowed to make more than a certain amount of money or risk losing access to the health care that’s keeping me going as a matter of policy seems just plain dumb. As a matter of day to day life, it’s a tad liberating. I don’t have to earn that much, so I can choose what I do much more than before.

I’m able to do so much more work for the HPS Network, and that makes me happier than I’ve been in years. I may not have an extra dime to my name, but I wake up in the morning and feel like what I’m doing has great value. I feel as though my life has purpose, and if it had to end early, it’s at least being well spent. That’s not such a horrible deal.

Photos from Oysterfest

noreply@blogger.com (Heather Kirkwood) — Tue, 03 Nov 2009 01:31:00 +0000

I haven't yet posted a news story about Oysterfest on the HPS Network Web site, partly because it takes a little while after a fundraiser for the dust to settle so you can really see, minus costs and late donations, how well you did.

I am worried that we didn't make as much as we have in the past this year because we were rained out one day. This fundraiser does have a lot of up-front costs.

In the meantime, however, I wanted to send out a huge kudos to all of those who came out to help, or who bought our goodies. Grin!

Above are some photos from our famous photographer in HPSland, Frankie the Cat!

An update from Tanzania

noreply@blogger.com (Heather Kirkwood) — Mon, 02 Nov 2009 23:27:00 +0000

Here's a story about a woman I think was featured in the 20/20 special. Thought you all might be interested. I* will be posting more info about a drive to help those in Tanzania shortly. I sent what I wrote off to be fact checked to make sure I pass along the right info.

Albino victim evicted from safe-house
By Erick David Nampesya BBC Swahili service, Ngara, Tanzania

Mariam Staford Bandaba is too scared to return to her home village
One year ago, Mariam Staford Bandaba, an albino woman living in Tanzania, was viciously attacked by a machete-wielding gang who tried to kill her and sell her remains for witchcraft.

She escaped with her life, but only just.

The attackers chopped off one of her hands - the other had to be amputated in hospital, where she spent weeks recovering from her horrific injuries.
Traumatised, Ms Staford Bandaba then took the brave step of identifying her attackers.

She was taken to a safe-house where she lived under government protection.
But the government recently decided she could no longer live there, leaving the 28-year-old fearing for her safety.

The administrative officer in the village where she was re-housed, Erasmus Rugarabamu, told the BBC Swahili service that the situation had improved and no albinos had been killed in her home village in the north-western Kagera region in the past year.

The decision by the authorities comes just a few weeks after a court sentenced three men to death for the murder of an albino boy.

Albino murders
Ms Staford Bandaba is one of thousands of people with albinism who live in fear in Tanzania.

Her harrowing tale has become commonplace in a country where 53 albinos are believed to have been murdered in the past two years.

Albinos, who are pale because of a lack of pigment in their skin, have been routinely killed because witchdoctors say that potions made with their body parts will bring good fortune in love, life and business to those who use them.
The killings have also spread to neighbouring Burundi where at least 12 people have been murdered.

The victims were mutilated and their body parts are believed to have been sold in Tanzania to make potions.

One man was sentenced to death and eight others were jailed in Burundi earlier this year.

Ms Staford Bandaba's alleged attackers have been caught in north-western Tanzania, the region where the vast majority of the murders have been carried out.

Tears
The story of her eviction caught the attention of a businessman who has agreed to let her and her mother live in a room in his house for a year.

But after that she has no idea what will happen to her.

Before moving out of the safe house, she told me that she broke down in tears when the district commissioner told her the news.

"I can't imagine what will happen. What I did in front of him was just start crying."
I was born an albino, but my attackers have made me disabled

Mariam
She is even more upset because it is not just her who had to leave.

Her father and four siblings who were taking care of her and feeding her were also evicted.

They have had no choice but to return to the village where she was so brutally attacked.

Her father, Staford Bandaba, admitted he was very anxious about reprisal attacks being carried out on his family.

"Those who are responsible, all their relatives are still living there in the village, and those released from prison, are still living where we were living. So how can we stay there?"

But Mr Rugarabamu defended the government's decision.

"Some of the attackers were found not guilty, so we can't keep them in prison, so they will be allowed to return to the village according to the law. But those found guilty are still in prison awaiting their fate."

That is little comfort for Ms Staford Bandaba's father.

Now that she no longer has government protection, "We are worried that they will finish her off."

And he is not the only one who thinks that could happen.

Condemnation
"Albinos are still being hunted and we don't yet know how to solve the problem," one local resident says.

"We cannot understand this decision."

"The government only seems to be doing half its duty. They started well and they should continue to help Mariam get a permanent house which will be safe," another person tells me.

Tanzania's president has introduced measures to protect albinos
President Jakaya Kikwete has said the albino murders have brought shame to Tanzania and his government has taken steps to identify and prosecute the perpetrators.

In March thousands of people took part in an exercise to identify those they suspected of being involved, by filling in forms anonymously.

The authorities have also issued a ban on all traditional healers, and several people have been arrested.

The government has now given Ms Staford Bandaba a plot of land to build a house away from her village.

But she says she has no money for the construction work, leaving her feeling abandoned at a time when she needs the help most.

"I was born an albino," she says. "But my attackers have made me disabled. I am begging all Tanzanians to kindly keep on helping me, because my situation is now worse. I have no hands."

Fortunately, a local businessman has heard her plea.

But in a year's time, Ms Staford Bandaba will once again be faced with the prospect of having to return to the village where she was nearly killed.

Please say some prayers for Maria G

noreply@blogger.com (Heather Kirkwood) — Mon, 02 Nov 2009 04:15:00 +0000

Maria G, one of our HPS friends, has been in the ICU for the past few days. She's on the mend and seems to be improving. Maria needs a lung transplant, but before she can be listed, had to undergo some further tests. Her lung then callapsed. Please pray that all of her tests come out well and she gets on the transplant list soon.

DelVecchio tag sale another success

noreply@blogger.com (Heather Kirkwood) — Mon, 02 Nov 2009 04:13:00 +0000

The DelVecchio family held their annual tag sale the last weekend in October and raised more than $580 to benefit the HPS Network, despite the rainy influence of mother nature. Most items sold for between a nickel and a quarter. The most expensive item for sale, says Marie DelVecchio, was a bicycle for $10. “Neighbors call me up all the time wanting to know when the next sale will be,” says Marie. The DelVecchio family has established their tag sale as an annual neighborhood event. They take donations of items to sell all year.

Baking for the cure

noreply@blogger.com (Heather Kirkwood) — Sun, 01 Nov 2009 01:02:00 +0000

Christina McGillicuddy, 9, saw an opportunity when her grandparents recently held a yard sale in Longmeadow, Mass. She held a bake sale at the event and raised more than $80 for the HPS Network. Christina’s mom helped bake a selection of cookies, breads, muffins and brownies – all priced between 50 cents and a dollar. The day of the sale Christina ran the bake sale and sold the items herself. She educated every customer about HPS and sent them home not only with something good to eat, but an HPS brochure to learn more about the people they’d just helped with their purchase. Way to go Christina!!!!

The big kiss

noreply@blogger.com (Heather Kirkwood) — Sun, 01 Nov 2009 00:57:00 +0000

The happy couple

noreply@blogger.com (Heather Kirkwood) — Fri, 30 Oct 2009 23:16:00 +0000

Hundred People Search update

noreply@blogger.com (Heather Kirkwood) — Fri, 30 Oct 2009 23:03:00 +0000

This week we added one new person to the HPS registry. That puts us at 33 to go on the Hundred People Search challenge! Way to outreach! Thanks to everyone in the HPS community and the albinism community that's helping out.

Genetics educational resource I thought I'd share

noreply@blogger.com (Heather Kirkwood) — Fri, 30 Oct 2009 22:51:00 +0000

This was mentioned in the National Organization of Rare Disorders newsletter. Just thought I'd share it if anyone's interested.

Online Talking Glossary of Genetic Terms
The National Human Genome Research Institute has launched the next generation of its online Talking Glossary of Genetic Terms. The glossary "talks" because users can actually hear an audio pronunciation of each term, and also listen to an audio explanation from scientists who provide context and other supplementary information. The updated glossary gives students, teachers and the public a reliable online resource for more than 200 terms and basic concepts behind today's breakthroughs in genetics and genomics. The glossary is available at www.genome.gov/glossary .

Another story about life for people with albinism in Burundi

noreply@blogger.com (Heather Kirkwood) — Fri, 30 Oct 2009 22:37:00 +0000

Albinos under Burundi police protection welcome Napoleon (age 1 week)

28 Oct 2009 09:18:00 GMT 28 Oct 2009 09:18:00 GMT ## for search indexer, do not remove
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Source: International Federation of Red Cross and Red Crescent Societies (IFRC) - Switzerland
By Alexis Manirakiza in Ruyigi, Burundi
Website: http://www.ifrc.org

Reuters and AlertNet are not responsible for the content of this article or for any external internet sites. The views expressed are the author's alone.

The picture shows Napoleon Ahishakiye, an albino baby born on Thursday 15 October 2009 and as far as anyone knows the first albino birth in a shelter, with his 18-year-old albino mother, Emelyne Banteyineza. (Photo: Alex Wynter/IFRC) (p-BDI003) Napoleon Ahishakiye, a healthy boy, was born on Thursday 15 October 2009 - as far as anyone knows the first albino birth in one of the shelters still scattered around the eastern Burundian province of Ruyigi, near the border with Tanzania.

After the occult-based killings began here in August last year, the Ruyigi local authorities had to resettle 60 albinos in secure locations the police could guard.
And there at least 20 remain, including Napoleon's albino mother, Emelyne Banteyineza, 18, who sits in the shade next to her grandmother, Candide Ntawenganyira, who is black and estimates her age at "about 70".

Emelyne has seven siblings, including one other albino. Candide, whose own parents were black, says she puzzled for a while about the sudden emergence of albinism in the family, then decided "it's God's will" and dismissed the issue.
Candide, whose Kirundi name translates as "I have no one to take my worries to", is clearly too delighted with her new great-grandson to think much about the shadowy albino-hunters - working for big-money buyers in Tanzania, most Burundians believe - who have killed 12 people in Burundi and caused the displacement of many others in several provinces.

To read more go to: http://www.alertnet.org/thenews/fromthefield/218536/125672168994.htm

Good Luck DelVecchio family!

noreply@blogger.com (Heather Kirkwood) — Fri, 30 Oct 2009 22:03:00 +0000

Tomorrow and Saturday the DelVecchio family will be holding their annual garage sale to benefit HPS. This sale has become quite the event in their neighborhood. People donate items for sale all year, and the DelVecchios manage somehow to store them in every nick and cranny they can find - from the garage to the attic.

Say some prayers that the weather is nice, and the customers aren't too stingy. Grin!

Update on health care reform

noreply@blogger.com (Heather Kirkwood) — Fri, 30 Oct 2009 20:36:00 +0000

I know many blog readers are following these issues. Below is a summary sent out by the American Thoracic Society to their members. There are a lot of things in the House bill I like - some things I don't like - and it's all my opinion and not necessarily the Network's. But, I'll have to blog about all that later. As you noticed, I've been somewhat absent from the blogosphere, and boy do I have a LOT of catching up to do!

House Leadership Releases Merged Healthcare Reform Bill
Yesterday, the House released a healthcare reform bill that merges the bill passed by the three House committees of jurisdiction (Education & Labor, Energy & Commerce, Ways & Means). The legislation is expected to be considered by the full House next week.

Major provisions of the bill include:Coverage:• Expansion of health insurance to an estimated 96 percent of legal US residents under 65• Individual mandate with penalties•.Employer mandate for those with payrolls over $500,000 with penalty• Subsidies for low- and middle-income families• Medicaid expansion for families at or near poverty levelInsurance reform:• Ban on pre-existing condition exclusions• Ban on rate adjusting based on pre-existing conditions or gender• Limits on rate adjustment, limited to age and family size • Public Option with negotiated provider payment ratesFinancing:• $480 billion tax increase for singles $500,000/families $1 million• $20 billion tax on medical devices• $400 million in spending cuts (mostly Medicare)Of specific interest to the ATS, the bill includes:• Medicare coverage of end-of-life counseling (described as "advance care planning" in the bill)• SSI eligibility exemption for clinical trials participation compensation - Improving Access to ..Clinical Trials • Expansion of Comparative Effectiveness Research• Provisions to address healthcare workforce shortages• Physician payment "sunshine" requirements - but with an exemption for industry- sponsored CME ..activities • Expansion of Medicare quality programs • Expands Medicare and Medicaid beneficiary access to preventive services by eliminating.cost- ..sharing • Strengthening of the public health infrastructure through creation of a Public Health Investment ..Fund with authorized funding of $33 billion over 5 years• Creation of a Prevention and Wellness Trust Fund for community-based prevention and chronic ..disease management with authorized funding of $34 billion over 10 years.

Medicare SGR FixMissing from the bill is a permanent fix to the Medicare sustainable growth rate (SGR) formula. The earlier versions of the House bills had included a permanent fix to the SGR. The House leadership has decided to address the SGR fix in separate legislation. That separate legislation was also introduced yesterday and will likely be considered in the very near future. The ATS, along with the rest of the physician community, is committed to finding a permanent fix to the SGR problem. We will continue to urge Congress to provide a permanent solution to the SGR problem within the context of healthcare reform.Next StepsThe House is expected to debate the bill next week with a final vote possible as soon as Friday (but more likely running into the weekend or the following week). The ATS Washington Office will be in contact with members of the House to articulate our support for key provisions for the bill, including the public option, and our concerns about other the areas of the bill, including consideration of hospital-acquired conditions in quality measures.