PHA Daily Beat: News for your Health and Heart

Pulmonary Hypertension in U.S. Veterans Underdiagnosed

2013-05-25T15:00:00.000-04:00

A study in the Journal of the American College of Cardiology (JACC) reported that severe pulmonary hypertension is under recognized and associated with substantial mortality in U.S. veteran patients. Veterans show elevated rates of cardiopulmonary diseases that promote PH. The study recommends enhanced awareness among clinical cardiologists about PH diagnostic testing.

Read article | Get involved in PHA’s early diagnosis campaign, Sometimes it’s PH

Young Adults: Connect with Generation Hope

2013-05-25T11:00:00.000-04:00

The mission of Generation Hope, PHA's group for patients in their late teens, 20s and 30s, is to connect young adults with PH and provide a safe and positive place to find support, inspiration and information. This is accomplished through, blogging, email groups and social networking and through the collective support of patient-led advocacy, awareness and fundraising initiatives.

"Young adults have the potential to give hope to a generation that read about poor statistics and outcomes from a previous generation... it is my hope to have our generation see the cure for PH." - Lindsay

Balancing Act: Parents Weigh in on Sibling Issues

2013-05-24T15:00:00.000-04:00

It can be hard to balance the needs of all your kids — especially when one of your children requires intensive medical care. We asked parents to share their tips for helping children cope with a sibling’s PH diagnosis.

Having Time for Everyone

Support network. Everyone can play a role in helping kids cope with PH in the family. When Britt’s 4-year-old daughter was diagnosed with PH, Britt and her husband were concerned about helping their 8-year-old cope. “We notified Gracie’s Brownie troop, teachers, our friends, neighbors, and family and asked that they give any time they could to Grace,” Britt shared. “Read, take her places, play dates, movies, sit and talk — anything that would make her feel loved, especially during the times Mommy and Daddy couldn’t be around.”

Celebrate accomplishments. If you can’t be there in person, find ways to let children know you’re thinking of them and celebrating with them. “I missed Sydney’s last day of elementary school because Brooke was having heart surgery hours away,” Billie told us. “I had a limo pick up Sydney and her friends from school and take them out for pizza and ice cream.”
Turn medical trips into vacation opportunities. “Since we no longer can afford to travel very far for family vacations, I usually ask if either of the kids wants to go on the medical trips to New York,” said Billie, who has two kids in addition to her daughter with PH. “All three kids have been able to take turns bringing a friend to New York. There is usually plenty of time for some fun before and after the tests.”
Read More...

Associated Disease Patients: Coordinate Your Care

2013-05-24T11:00:00.000-04:00

Many PH patients are diagnosed with PH in association with one or more related conditions. Learn more about coordinating specialists and concurrent treatment plans, education non-PH specialists about PH treatment and gathering medical information about how PH interacts with other diseases at PHPlus.

Research on Two New Pulmonary Hypertension Drugs Presented at ATS

2013-05-23T20:00:00.000-04:00

The American Thoracic Society recently held their annual conference and evidence from studies on two new pulmonary hypertension drugs in the pipeline were presented.

Riociguat increased walk distance by pulmonary arterial hypertension patients. Read article

Macitentan improves health-related quality of life in pulmonary arterial hypertension (PAH) and reduces PAH-related hospitalizations. Read article

Learn more about current pulmonary hypertension treatments

There's Still Time to Donate in the Spring Appeal

2013-05-23T15:00:00.000-04:00

There’s still time to make your 2013 annual fund contribution to support PHA’s mission to provide hope through support, education, research, advocacy and awareness. With your help, we will continue to make progress in the fight against PH. www.PHAssociation.org/GiveNow

The Treatment of Pulmonary Arterial Hypertension with the Anti-proliferative Agent Hydroxyurea

2013-05-23T11:00:00.000-04:00

The Treatment of Pulmonary Arterial Hypertension with theAnti-proliferative Agent Hydroxyurea

Ronan Desmond, MD
June 5, 2013 at 3 p.m. ET/12 p.m. PT

Pulmonary Arterial Hypertension have been shown to have similar characteristics with myeloproliferative disorders that are normally treated with hydroxyurea. Hydoxyurea works in these patients to decrease CD34+ hematopoietic progenitors and decrease cell counts. NHLBI researcher Ronan Desmond, MD will discuss his group's hypothesis that hydroxyurea will improve hemodynamic parameters in this difficult to treat group of patients. The group's study will be looking at the effects in NOC/SCID mice in which the disease phenotype has been replicated.

Genetic Alliance, HRSA & ACMG conducting survey to improve health care access

2013-05-22T20:00:00.000-04:00

Genetic Alliance, in collaboration with the American College of Medical Genetics (ACMG) and the Health Resources Services Administration (HRSA), is conducting this survey to assess how individuals with genetic conditions access health care and support. The data will be very helpful in painting a picture of health care experiences of individuals with genetic conditions and their families, and will provide direction for future programmatic efforts with the goal of improving access and health. To be eligible, respondents must have been told by a doctor or other health care provider that they (or their child) have a genetic condition.

If you have any questions about the survey or use of the data, please contact Sharon Romelczyk, Program Manager at sromelczyk@geneticalliance.org. The project has been approved by Genetic Alliance’s Institutional Review Board (IRB) to protect all survey respondents and ensure that all responses will be kept confidential.

Faces of PH: Memorial Edition: Dorothy Olson

2013-05-22T15:00:00.000-04:00

“We wanted to start an organization that would be helpful and help a lot of patients. Sitting around the kitchen table those many years ago…you just couldn’t begin to fathom what could possibly come out of this organization.”

-Hear more of Dorothy Olson’s story. Listen to this podcast, recorded at PHA’s Conference in 2012.

Dorothy’s Victory: Remembering Dorothy Olson, One of PHA’s Founders

2013-05-22T11:04:00.003-04:00

from L-R: Judy Simpson, Dorothy Olson, Pat Paton and Teresa Knazik

Dorothy Olson, a PHA founder, passed May 18 at age 88 after a long life devoted to helping other PH patients. The following tribute, written by PHA President Rino Aldrighetti, was shared at her memorial service on May 21.

If Dorothy Olson's life could be described in two words, they would be: Dorothy's Victory.
When Dorothy Olson was diagnosed with pulmonary hypertension in 1978, it was 18 years before the first treatment for the disease. It was seven years before completion of research at the National Institutes of Health (NIH) would show that, without treatment, only half of all PH patients would survive to 2.8 years beyond diagnosis. And it was 13 years before Dorothy sat around a kitchen table in Indian Spring, Fla., with Pat Paton, Judy Simpson and Teresa Knazik to found what would become the Pulmonary Hypertension Association.

Dorothy beat the odds, surviving for 35 years after her diagnosis. But she did far more than live a full and complete life to the age of 88. She lived a life that made a difference. She made a difference for thousands and thousands of patients who had the same disease that she did. The difference she made will affect patients for many generations. It is her legacy.

This is her story:

When Dorothy was running through an airport to catch a flight in 1978, she was stopped by two stewardesses who saw that she was ready to collapse. They convinced her to delay her flight until she felt better. Several weeks later, she was admiring a bunting bird through her bedroom window when she collapsed across her bed. She was hospitalized for five weeks with no diagnosis. Then, a young resident suggested it might be a rare illness – pulmonary hypertension – that had been mentioned in passing in one of his classes.

Dorothy had her diagnosis, and she had her mission. She even adopted a new motto: "If it is to be, it must be me."

Dorothy began a lonely and years-long search for other patients. She and Pat Paton, Judy Simpson and Teresa Knazik met around Pat's kitchen table in 1991 – not long after only 187 diagnosed patients had been identified in the U.S. without any treatments to help them.

The women began a photocopied newsletter – Pathlight – and gave it to their doctors, who gave it to patients. Soon they had identified many more patients than the 187 the federal government had located five years earlier. They began and staffed a volunteer telephone helpline to talk to patients whose lives had been turned upside down by a PH diagnosis.

One day, a young woman called the helpline. She was in the parking lot outside her doctor's office. She was standing there with her father, and both were terrified. Her doctor had just told her that she had PH and that she had six months to two years to live. He gave her a brochure from the organization the four women had founded. The helpline was her lifeline. Dorothy told her she had been living with the disease for 18 years. The woman burst into tears.

The organization Dorothy co-founded grew over the years and she remained active, both on its Board and on its telephone helpline. As Dorothy's vision declined, she told leaders, "I may not be able to see anymore, but I can still dial a phone. Use me."

Today, the organization Dorothy, Pat, Judy and Teresa co-founded is recognized around the world and includes two medical organizations. The disease itself has as many or more treatments than all but two of the 7,000 rare diseases identified in the U.S.

None of that would have happened if Dorothy hadn't begun her search and spent the 35 years from the day of her diagnosis to the day of her death connecting patients and fighting back against the disease that had intruded in her life. That is Dorothy's Victory.

To the pulmonary hypertension community, Dorothy Olson is a hero who will not be forgotten. She lives on in our love and our gratitude.

Give a Caregiver Shout-Out!

2013-05-21T15:00:00.000-04:00

The "Caregiver Shout-Out" honors family members and friends in the PH community who provide patients with daily encouragement and support. For a chance to express gratitude to a loved one in Pathlight, tell us about a family member or friend whose support has made a difference in your life.

Medical professionals: PHPN abstract submission deadline extended to June 3

2013-05-21T11:00:00.000-04:00

Medical professionals: Need more time to submit an abstract for the PH Professional Network Symposium Poster Hall? The deadline for abstract submission has been extended until June 3, 2013!

Research abstract audiences will be a mixture of new to experienced healthcare professionals working in the field of pulmonary hypertension. While PHA encourages the submission of original abstracts, submissions do not need to be original work. Abstracts also do not need to be fully executed in practice.

Guidelines for specific clinical situations, implementation of a process to improve patient outcomes or innovative use of technology in clinical practice

Development or implementation of a performance improvement program
Patient safety initiatives
Patient satisfaction improvement initiatives
Identification and implementation of PH educational needs for healthcare professionals
PH nursing orientation programs, role implementation or development of practice guidelines

Topics are subject to the discretion of the Symposium Abstracts Subcommittee and the Pulmonary Hypertension Association. If you have any questions about the appropriateness of your topic, please contact a PHPN abstract mentor by emailing PHPN@PHAssociation.org.

Shire is looking for the BRAVEST caregivers in the world

2013-05-19T11:00:00.000-04:00

If you know a caregiver who performs in extraordinary ways, who gives their time, support and compassion regularly through caring for someone else in a meaningful, selfless manner, then click below to learn more about the Shire BRAVE Awards. If they meet the eligibility criteria, nominate them for a 2013 BRAVE Award and they could receive $10,000 USD or their local country currency equivalent from Shire.

PHA Staff Attend NORD 30th Anniversary Gala - Inspired by patient speech

2013-05-18T20:00:00.000-04:00

Earlier this week, a number of us at PHA attended the National Organization for Rare Disorders 30th Anniversary Gala and was extremely inspired by a speech delivered by a 22-year-old afflicted with epidermolysis bullosa, a rare and crippling dermatological disorder that affects internal organs.

“Just because we are labeled rare, we are no less than any other person… while we did not choose to have a rare disorder, we can choose to act for change. We can choose to find our own voice amidst the search for effective treatments and expanded access to quality, affordable health care. We accept this challenge as we move on to new frontiers. And as we do this, we will never forget those remarkable leaders who first declared that we were worth it.” –Megan Barron

Is Facebook Part of Your Estate?

2013-05-18T15:00:00.000-04:00

When you begin creating or updating your estate plans, you'll likely spend the bulk of your time on these two points: determining which assets you have, and then deciding which people and charities will receive these items after your lifetime.

But have you given a thought to your online legacy?

Bulgarian Society for Patients with Pulmonary Hypertension Online Dance for World PH Day on 5/22

2013-05-18T11:00:00.000-04:00

Miss World PH Day already? Well the fun isn’t over yet! Join the Bulgarian Society for Patients with Pulmonary Hypertension from 7 a.m. to 12 p.m. on Wednesday, May 22 online to learn how to dance and to “get breathless for PH!”

Golf tournament honors Pfafftown woman’s struggles

2013-05-17T20:00:00.000-04:00

The 2013 NC Cure PH Golf Tournament will be held this Saturday, May 18, at the Pudding Ridge Golf Club in Mocksville, NC. This annual event, hosted by Cindy Pickles and her support group, features a golf tournament followed by a dinner reception with speaker presentations, raffles and silent auction. This year’s event will be held in memory of Donna Wesley.

Monthly Patient Call is May 23

2013-05-17T15:00:00.000-04:00

Want to chat with other patients? We have a monthly telephone chat to discuss living with PH!

When: Thursday, May 23, 8 p.m. ET

Where: On the phone and online. The web portion is optional. You must dial in to participate. Details will be provided after you register:

For assistance: Kim, 301-565-3004 x777

World PH Day Unites the Globe

2013-05-16T15:00:00.000-04:00

World PH Day 2013, held May 5, brought associations around the globe together to raise awareness and show support for pulmonary hypertension patients. The Asociación Nacional de Hipertensión Pulmonar in Madrid, Spain, held the first World PH Day last year with the hope that the day would truly become a world day with events around the globe. From a handful of events last year (a symposium in Madrid and some satellite events in China and Argentina) to more than 60 events this year, this dream has truly become a reality.

Every PH patient association in the world did something special for World PH Day, including groups of people in Chile and Costa Rica, where patients and families are trying to start associations. In Chile several people held a protest for insurance rights, and in Costa Rica patients and families celebrated a “healthy living” day. This year many groups around the world took to the streets to raise awareness by handing out flyers or holding flash mobs, a sudden gathering of a group of people in a public place. The day was also used as a way to reveal new programming or materials, like a Patient’s Guide in Argentina and a new website design in South Africa. PHA Europe’s “Get Breathless” sporting events included everything from bicycling to Six-Minute Marathons to boxing and dancing activities. Even Pope Francis acknowledged World PH Day by mentioning patients and their families in his address on May 5. For more World PH Day coverage and to see a video of Pope Francis acknowledging pulmonary hypertension in his speech, visit PHA President Rino Aldrighetti's blog.

For those who could not join an event in person, the World PH Day website provided opportunities for participation. The website has had more than 11,000 page views and nearly 4,000 website views, with a peak of nearly 600 views on World PH Day. People from 83 countries visited the website. The World PH Day Facebook group had a reach of more than 3,000 people on World PH Day alone. Additionally, 149 people submitted their photos to the Worldwide Photo Mosaic, and many more posted pictures on other social media sites like Facebook and Weibo! Photos from World PH Day events will be available on the World PH Day website soon.

If you missed World PH Day, it’s not too late. Some events inspired by World PH Day are still going on, including PHA Europe’s Ironman events and online dance classes hosted by the Bulgarian Society for Patients with PH on Wednesday, May 22, from 7 a.m. to 12 p.m. ET. Start your Wednesday off by getting breathless for PH!

Staying well ... IN the hospital?

2013-05-16T11:00:00.000-04:00

Several organizations, doctors and voices in the medical community have been putting the word out on patient and general safety- while in hospital. Recently, Leana Wen, M.D an Emergency physician at Brigham and Women's & Mass General Hospital; Author, 'When Doctors Don't Listen'; Fellow, Harvard Medical School recently blogged :12 Ways to Stay Safe in Hospitals. Do you have tips for hospital safety and wellness to share with the PH community?

Medical Professionals: HA is partnering with the Yale School of Medicine Section of Pulmonary, Critical Care & Sleep Medicine for the 7th Annual Pulmonary Hypertension Symposium as part of the BME in PH program

2013-05-15T20:00:00.000-04:00

PHA is partnering with the Yale School of Medicine Section of Pulmonary, Critical Care & Sleep Medicine for the 7^th Annual Pulmonary Hypertension Symposium as part of the Building Medical Education in PH program! Medical professionals are invited to attend this symposium, which will take place on Thursday, June 6, 2013 from 7:30am-5pm in Madison, Conn.

The course will review:

· The proper diagnostic workup of patients with PH on echocardiography;

· Currently available PAH-targeted therapies;

· Unique features of Systemic Sclerosis-Associated PAH and the cardiac adaptations that evolve in these patients

· PH in pregnancy outcomes; and

· The approach to the intensive care management of right heart failure from severe PH.

Learn more or register here.

For more information on how to partner your institution’s PH programs with PHA, visit our Building Medical Education in PH page or contact Briana at BME@PHAssociation.org or 301-565-3004.

Swing for a cure in North Carolina this Saturday

2013-05-15T15:00:00.000-04:00

Let’s swing for a cure in North Carolina this Saturday, May 18, at the “2013 NC Cure PH Golf Tournament.” Join us for a round of golf, speaker presentation by ph specialist, Dr. Rudy Pascual, dinner, raffle and silent auction. There’s still time to register!

World PH Day Flash mobs

2013-05-14T20:00:00.000-04:00

World PH Day inspired several flash mobs around the globe- Check out
Fiddlers and step-dancers doing a flash mob in order to raise awareness for PH in Ottawa.

Our friends in Italy organized a kind of flash mob blowing bubbles in St. Peter´s square.

Sami Said, MD, Distinguished Professor and Dedicated Friend to the Rare Disease Community, Has Passed Away

2013-05-14T17:00:00.000-04:00

PHA recently learned that Sami Said, MD, passed away on Tuesday, April 30. Dr. Said was a distinguished professor at Stony Brook School of Medicine and the discoverer of the neuropeptide vasoactive intestinal peptide (VIP).

"When discussing Dr. Said with a colleague, we both agreed that he could be described as a scholar and a gentleman, and we then both agreed that that was a tremendous understatement," says Paul Strachan, MD, one of Dr. Said's colleagues at Stony Brook.

Dr. Said trained in medicine in Egypt with a Fulbright Fellowship. He studied physiology as a resident and fellow at Bellevue Medical Center and later at Johns Hopkins University. During his long career, Dr. Said was professor of medicine at the Medical College of Virginia and professor of medicine and pharmacology at Texas Southwestern. He was chief of pulmonary medicine at the Dallas VA Medical Center for 10 years. In 1981, he became chief of pulmonary and critical care at the University of Oklahoma, and in 1987, he went to Chicago and directed research at the University of Illinois and the VA Hospital.

In 1968, Dr. Said took a sabbatical from the Medical College of Virginia and spent a year working at the Karolinska Institute in Sweden. Here, Dr. Said discovered VIP. VIP has potent pulmonary vasodilator properties, which means it opens up the pulmonary vessels. He received the VA's highest scientific honor, the Middleton Award, for this discovery. In 2000, the American Thoracic Society named him the "Amberson Lecturer" for his major contributions to pulmonary physiology and pharmacology.

Dr. Said actively pursued his research throughout his entire career. He published approximately 400 scientific papers related to VIP. He was a member of the National Organization for Rare Disorders (NORD) and served for many years as the chairman of NORD's Medical Advisory Committee. Read NORD's tribute to Dr. Said.

Dr. Said was respected throughout the world and actively traveled to international meetings, supporting international collaboration in his field until his death. He never retired. He will be missed, and PHA extends our condolences to Dr. Said's family.

Parent & Caregiver Monthly Support Calls this week

2013-05-14T12:05:00.000-04:00

5/15 Caregiver Call

PH Caregivers – connect with other caregivers at 1:30pm ET/11:30am PT for information, tips and support. Call lasts one hour; we welcome you to join us for as long as you like. Details at

5/16 Parents Call

Parents of PH Kids – Join us at 8:30pm ET/5:30pm PT for a call on using laughter to cope with stress. Call lasts one hour; we welcome you to join us for as long as you like. Details at