Monday, July 30, 2012

Teens Share Tips for Coping with Pulmonary Hypertension

Teens are becoming independent, exploring new interests, busy with their social life – and coping with pulmonary hypertension. We talked to teenagers living with PH and asked them to tell us about what they had to deal with. Check out these articles for their tips on life with PH.

Read tips from teens on coping with pulmonary hypertension

Ringwood Teenager Meets his F1 Heroes

(Salisbury Journal) - A teenager with Idiopathic Pulmonary Arterial Hypertension met his Formula 1 heroes at the British Grand Prix. Samuel Cheetham met almost all the drivers, including Lewis Hamilton and Jenson Button, and had a tour of the pit lane. Read article

Lexapro Investigation Reveals Severe Side Effects and Birth Defects

(SFGate) - Antidepressant medication is the most prescribed drug in the country. According to the Center for Disease Control (CDC), more than 11 percent of Americans are prescribed antidepressant medication. The National Birth Defects Prevention Study, funded by the CDC and the New England Journal of Medicine, investigated the medication called Lexapro and found many serious side effects including cardiac birth defects or congenital birth defects. Read article

Friday, July 27, 2012

This Fall Tell Your Members of Congress "Sometimes it's PH"

When Members of Congress co-sponsor the Tom Lantos PH Research and Education Act, they take a stand for education and early diagnosis. This fall meet with your elected officials, share this message and ask them to co-sponsor the only PH-specific bill in Congress. Get started by watching PHA’s Lobby Locally Webinar or contacting Elisabeth at Advocacy@PHAssociation.org.

Fact Sheets & Tips on Pulmonary Hypertension for Patients & Caregivers

The Patients and Caregivers sections of PHA's website are packed with lots of fact sheets and tips for living with pulmonary hypertension. Check out the About PH, Living with PH, and Newly Diagnosed Patients sections and much more.

Patients | Caregivers

Thursday, July 26, 2012

Watch the 2012 Conference Highlights Video

You can view the 2012 Conference Highlights Video to experience the excitement surrounding the education and many other activities at PHA's 10th International Pulmonary Hypertension Conference and Scientific Sessions. Check it out!


Patient Telephone Support Group Meeting Tonight!

Want to chat with another patient? Can't make it out to a local support group meeting? A support group is only a phone call away. Our patient telephone support group makes it easier to participate regardless of your work hours, distance or health concerns.

PHA's Monthly Patient Telephone Support Group

When: Thursday, July 26, 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.

Register now!

For assistance: Debbie, 301-565-3004 x755

Wednesday, July 25, 2012

Paige for PH Awareness Video

Watch this video of a girl whose mother has pulmonary hypertension and how it affects her life.

Tuesday, July 24, 2012

Medical Professionals: New Recordings Available at PHA Online University

Two recordings from the 4th International Neonatal and Childhood Pulmonary Vascular Disease (NCPVD) Conference are now available: Challenges in the Acute Postoperative Management of PH After Congenital Heart Surgery (Lara Shekerdemian, MD) and Cardiac Catheterization in PH Beyond PVR (Hunter Champion, MD). Stay tuned for the release of sessions from the 5th Annual International NCPVD Conference.

Visit PHA Online University

PH Fact of the Week: Time to Diagnosis

  • The average time between pulmonary hypertension symptom onset and diagnosis is 2.8 years.
  • Many patients will see 3 or more different physicians over a 3 year period before they are properly diagnosed with pulmonary arterial hypertension.
  • 1 in 5 patients in the REVEAL Registry who were diagnosed with PAH reported symptoms for more than 2 years before their disease was recognized.
Learn more and get involved in PHA's early diagnosis campaign

Thursday, July 19, 2012

Health Reform and the Supreme Court: What Does It Mean for You?

On June 28, the Supreme Court declared the Affordable Care Act (ACA) constitutional. The ACA, commonly known as healthcare reform, contains several provisions that benefit pulmonary hypertension patients and their families, including the elimination of pre-existing condition coverage exclusions and the removal of lifetime benefit caps.

Learn more

Wednesday, July 18, 2012

Support PH Research

Research is the path to a cure for pulmonary hypertension. Help us continue to fund the vital work of talented and dedicated researchers with your donation today.

The Pulmonary Hypertension Association funds researchers such as Dr. Stephen Mathai from Johns Hopkins University. Dr. Mathai received the five-year PHA/NHLBI Mentored Patient-Oriented Research Career Development Award in 2009.

He says that working with PHA, “enables me to provide better care for patients and stimulates me to study the cause, effect, and potential treatment of this disease.”

Dr. Mathai is one of 48 promising researchers who have received a PHA research grant. Your generous gift to PHA today will ensure that we can continue to fund dedicated researchers like Dr. Mathai. 

Support PH research

Tuesday, July 17, 2012

Survival Guide Opens a New Chapter

Posted by Ellie Falaris Ganelin, PHA Design & Publications Associate, Survival Guide Editor

Survival Guide author Gail Boyer Hayes (left)
with Ellie Ganelin, PHA's Design & Publications Associate
At PHA’s 10th International PH Conference, I had the opportunity to meet Gail Boyer Hayes, the original author of Pulmonary Hypertension: A Patient’s Survival Guide. Gail is a longtime survivor, having lived with idiopathic pulmonary arterial hypertension (PAH) since 1983, and continues to be an inspiration to us all. At the time of her diagnosis, there were no resources about PH that were written for a patient audience. So Gail set out to create one, pouring over tons of medical texts and translating what she found into her own voice.

The Survival Guide has since become a valuable resource for not only patients with the disease, but also their families, medical professionals and others in the PH community.

Today, PHA works with medical professionals and patient volunteers to update the Survival Guide every year – and Gail still lends a hand in the process.  We have just released the fifth edition of the book, with more than half of the chapters updated for this release.

Learn more about the Survival Guide and order your copy

Regent Square Doctor Taking on Bike Challenge to Raise Awareness

(Forest HIlls-Regent Square Patch) - Their friendship was fueled by a love of cycling. Now, four Pittsburgh women are coming together to raise awareness of a debilitating condition that keeps most sufferers off a bike. Patricia George, M.D., a UPMC pulmonologist and Regent Square resident, along with three teammates, have formed Team PHenomenal Hope with support from UPMC and the Pulmonary Hypertension Association (PHA) to raise awareness of pulmonary hypertension. Read article

Monday, July 16, 2012

Caregiver & Parents Telephone Support Group Meetings This Week

Caregivers Telephone Support Group
Wednesday, July 18, 1:30 p.m. ET/10:30 a.m. PT

Call in toll-free to connect, learn and share strategies and experiences about caring for an adult with PH. The call lasts for one hour — join us for as long as you like.
Learn more


Parents Telephone Support Group
Thursday, July 19, 8:30 p.m. ET/5:30 p.m. PT

Were you at PHA's International PH Conference and want to reconnect with the other parents of PH kids you met? Did you miss Conference, but want to get up to speed? Call in toll-free to reconnect and compare notes.
Learn more

Thursday, July 12, 2012

Newly Diagnosed PH Patients Webinar Tuesday

Newly Diagnosed? What You Need to Know
Tuesday, July 17 at 3:00 p.m. ET/12 p.m. CT
Webinar (Phone AND Internet)


If you or someone you know was recently diagnosed with pulmonary hypertension, please join us on Tuesday, July 17 at 3 p.m. ET/12 p.m. CT for a webinar especially designed for newly diagnosed patients.  This webinar will provide a roadmap to help you gather information and make decisions in the weeks and months to come.

Facilitator, Maribeth Duncan, ANP-BC , will review the basics of what every pulmonary hypertension patient should know about PH, treatment and coping with this disease.

Register now

Congratulations, Shari Caffrey!

Shari, founder of Taylor's Wish, an organization created in memory of her young daughter, is one of three 2012 Local Lady GODIVA Summer Honorees! Each honoree will receive a grant of $1,000 toward her cause. At the end of the year, GODIVA will choose one Local Lady GODIVA Honoree and contribute $10,000 to her cause or organization.

Learn more

I’ve Had a Double Lung Transplant Already... And I’m Only 30

(The Sun) - Young mum Natalie Kerr was so ill she planned her own funeral and sorted out a will so her children would be taken care of. That was just a few months ago when Natalie was confined to bed by a rare condition called pulmonary hypertension that left her struggling for air and fighting for life. Today, Natalie is playing football with son Brandon and walking her daughter Isabelle to school  —  things that would have been impossible before she had a life-saving double lung transplant. Read article

Wednesday, July 11, 2012

Get Congress Thinking about PH this Summer

Lobby Locally! Visit your Members of Congress Without Leaving your State
Friday, July 13 at 2 p.m. ET/11 a.m. PT
Webinar (Phone AND Internet)


In a few weeks, your senators and representative will leave D.C. They’ll spend August, and much of the fall, back home in your state. Make the most of this chance to get them thinking about the election issue that matters to you: pulmonary hypertension!

During this webinar you’ll get expert advice and tips from PHA’s Washington Representative, Dane Christiansen, and longtime PH advocate, Steph Layer. By the end of the webinar, you’ll have the tools you need to set up a face-to-face meeting with your Congressional members to request their co-sponsorship the Tom Lantos Pulmonary Hypertension Research and Education Act (HR 1810, S 775).

Register now

Monday, July 9, 2012

Older Women May Be at Risk for Pulmonary Hypertension

(Medpage Today) - Of patients with systemic hypertension but preserved ejection fraction, those with pulmonary hypertension tended to be older and female, a retrospective study found. 72% of the patients with PH were women compared with 49% of those without PH, reported Monica Mukherjee, MD, from George Washington University in Washington, D.C., and colleagues. Moreover, the mean age of those with PH was 77, compared with 64 in those without PH, according to Mukherjee's presentation at the American Society of Echocardiography meeting. Read article

Friday, July 6, 2012

Advocate for PH this August Without Leaving your Home State!

“In some ways, this process is a numbers game …. Because PH affects relatively few Americans compared to other diseases, it is even more important that we have a good proportion of our community talking to their Congressional representatives. We can move this legislation through, but we need your help!”  — Laura D’Anna
Dianne Malley and her
daughter Carissa met with
New Jersey Sen. Robert
Menendez and his staff
last August.
Gaining Momentum
Since the beginning of the year, PHers have called, emailed and written to their Members of Congress 1,280 times! Their messages urge their senators and representatives to co-sponsor the Tom Lantos Pulmonary Hypertension Research and Education Act. In July and August, PHA will hand-deliver the latest batch of letters we collected at PHA’s 10th International PH Conference and Scientific Sessions.

Take the Next Step — Schedule a Visit with your Members of Congress This August
You don’t have to come to Washington, D.C., to talk to Congress about PH — many Members of Congress have offices in or around your hometown. Follow up your emails and phone calls with a meeting to build interest in PH research and education. Every August, Congress goes into recess and your Members of Congress will return to their states to meet face-to-face with their constituents about the issues that matter to them. Take this golden opportunity to educate your Members of Congress and urge them to co-sponsor the PH Research and Education Act.

Find out how to set up a visit at your local Congressional member’s office, or contact Elisabeth Williams at 301-565-3004 x753 or Advocacy@PHAssociation.org to get started.

Group Grants Wish for Ailing Husband

(Your West Valley News) - Since the time he was diagnosed with pulmonary hypertension, 57-year-old El Mirage resident Michael “Mack” McCarthy has dedicated much of his time to raising awareness of the condition and helping others afflicted with it. Now, with advanced-stage pulmonary hypertension and a prognosis of less than six months to live, all McCarthy wants is to attend the Pulmonary Hypertension Association’s biennial conference in Orlando, Fla.. PHA offered McCarthy a scholarship so he could make the trip, but the scholarship did not cover his wife, Mary.That’s where Dream Foundation stepped in, covering all costs for Mary so the McCarthys could make the trip. Read article

Thursday, July 5, 2012

$226,855 in Conference Scholarships Awarded

The popularity of our Conference Scholarship Program grew tremendously this year. In 2010, we received 376 applications and awarded 186 scholarships to attend our 9th International PH Conference. This year that number grew to 412 applications, and 283 applicants accepted our scholarship offer. We awarded $226,855 in scholarships this Conference!

Read more about Conference scholarships

'She's Still Alive in Me'

(WWLTV.com) - More than 100,000 people are on a waiting list in the United States for organ transplants, nearly 2,000 of those in Louisiana. In 2007, Cheryl Guillory, a Lafayette mother of three, was told she had pulmonary hypertension and her doctor’s diagnosis was blunt. “Go home and make burial arrangements,” Guillory recalled her doctor saying. Read article and watch news video

Tuesday, July 3, 2012

PHA Fights for Disability Assistance

On June 7, members of the PH community went to the Social Security Administration to make our case for why individuals with late-stage pulmonary arterial hypertension (PAH) should be granted Social Security Disability Assistance more quickly as part of the Compassionate Allowances program. This would allow certain PAH patients to automatically receive disability benefits.

Read more

Monday, July 2, 2012

Teen Fighting Pulmonary Hypertension Gets a Room Makeover

(WBIR-TV) - Cody Phillips dreams of riding his dirt bike again. Right now, doctor's orders and his oxygen tank only allow him to rev his bike engine once in a while. But Saturday, he got to take his mind off his illness thanks to the East Tennessee Chapter of the Make a Wish Foundation. Read article