PHA News – for patients, families, caregivers, and healthcare professionals
The Right Heart
Familial PAH Diagnosis Prompts Need to Give Back
Kayla Naecker had classic signs of pulmonary hypertension (PH), a disease that killed her biological grandmother. But Kayla, of Benld, Illinois, didn’t suspect PH. She was in her 20s, and her grandmother’s case was thought to be associated with diet pill use. Genetic testing after a right heart catheterization confirmed familial PAH, so Kayla had her 3-year-old daughter tested, too. Kayla shares her story with the Pulmonary Hypertension Association’s Right Heart Blog for American Family Month.
Thankful for Treatment Advancements That Give Hope
Pulmonary hypertension (PH) was no stranger to Albert Wright when she was diagnosed in 2018. Her oldest sister and a niece died from it. But Alberta lives life to the fullest, taking nothing for granted. She leads the Pulmonary Hypertension Association’s Detroit Support Group and administers a PHA Facebook support group page. A full-time teacher’s aide, she shares her PH journey with PHA’s Right Heart Blog for National Family Month in June.
Living in the Moment With New Lungs
A month before Genevieve Hughes turned 50, severe shortness of breath forced her to seek emergency treatment. “I thought I was just getting older and out of shape,” says Genevieve, who later learned she had idiopathic pulmonary arterial hypertension and eventually would need a double-lung transplant. Now two years post-transplant, she’s breathing deeply and enjoying her gift of life.
PH Changed Her Life. It Taught Her to Persevere
Diane Ramirez of Lexington, North Carolina, was diagnosed with pulmonary arterial hypertension in 1987. At the time, fewer than 200 cases were known of the disease then known as primary pulmonary hypertension (PH). Diane originally shared her PH journey in the December 2020 Pathlight magazine, which launched the Pulmonary Hypertension Association’s 30th anniversary celebration.
Post-Transplant Life is Tough. But This Teen Feels Blessed
Sarah Donoughue was terrified in 2018 when her care team suggested a lung transplant. Three years later, the 17-year-old Texan says she is living, loving and thriving at life. She shares her transplant journey for Donate Life Month in April.
Reenergized and Holding on to Hope
In 1966, 8-year-old Laura Hooley underwent surgery to repair a congenital heart defect. The surgery allowed her to play volleyball, ski and enjoy relatively good health. But her CHD eventually led to pulmonary hypertension. For American Heart Month, she shares what gave her new hope.
‘Can-Do’ Outlook Replaces ‘Sick Girl’ Self Pity
When Kathleen Grady started the Remodulin pump 11 years ago, she was sick, in pain and miserable. She felt sorry for herself all the time, especially after reading friends’ Facebook posts about fun activities. One day, she had an ah-ha moment.
How the Pandemic Delayed My PAH Diagnosis
Mark Synder of Waxhaw, North Carolina, was awaiting a cardiopulmonary exercise test in March after his first visit to a pulmonary hypertension (PH) specialist. The test was canceled as the COVID-19 pandemic forced closures of clinics, businesses and public spaces.
Featured News
Enter the PHA 2022 Theme Contest
Help the Pulmonary Hypertension Association (PHA) come up with a theme for PHA 2022 International PH Conference and Scientific Sessions. If PHA chooses your idea, you could win a $25 Amazon gift card, a one-year PHA membership and PHA swag. PHA 2020 begins a year from today in Atlanta. The contest closes Wednesday, June 30, so enter today. We will announce the winner by July 31.
Family Affair: 30 Years of Volunteering
Terry and Tom McGraw are among the families who have lived with pulmonary hypertension (PH) for many years – in their case, decades. In the early 1990s, when Terry was diagnosed, little information was available about PH, and the McGraws didn’t find the fledgling Pulmonary Hypertension Association (PHA) for about five years. Initially, they got involved to find answers and eventually became volunteers and fundraisers. The McGraws initially shared their story with Pathlight, PHA’s member magazine, in connection with PHA’s 30th anniversary.
Act Now: Ask Congress for Permanent Telehealth Access
During the COVID-19 pandemic, Medicare coverage of telehealth services increased. For the first time, people insured by Medicare became eligible for telehealth coverage no matter where they lived. The pandemic changes allowed telehealth visits from beneficiaries’ homes instead of approved telehealth locations.
Registration Open for PHPN Symposium
Allied health professionals: Sign up for the Pulmonary Hypertension Association (PHA) PH Professional Network (PHPN) Symposium, Sept. 30 through Oct. 3. Join your PH colleagues for our first online event to network and earn continuing education credit. This year’s theme is “PHiguring Out the Puzzle: Pieces to Innovative, Patient-Centered Care.” Register by July 7 for the early bird discount.
Generic Treprostinil Injection Available for Subcutaneous Administration
A generic form of Remodulin is available for to treat pulmonary arterial hypertension (PAH) subcutaneously, thanks to a new medication cartridge. The new cartridge became available May 21.
Support the PH Community for Another 30 Years
When Monica Penaranda was diagnosed with PH, she was 16 years old. Thanks to the Pulmonary Hypertension Association (PHA), she found resources to survive and thrive for the past 23 years. “PHA provided the hope I needed to get through the tough days,” she says. Monica, the face of PHA’s 30th anniversary spring fundraising campaign, encourages the PH community to help PHA continue providing support, education and research.
Get Your Familial PH Questions Answered
Dr. Wendy Chung discusses the basics of genetics, hereditary pulmonary arterial hypertension (HPAH) and the genetic causes of pulmonary arterial hypertension (PAH). She explains commonly used genetic tests for pulmonary hypertension (PH) in the United States and addresses what happens during a genetic counseling session.
Free Brochure: PH & Sjögren’s Syndrome
Learn more about the connection between pulmonary hypertension (PH) and Sjögren’s syndrome. The Pulmonary Hypertension Association’s newest free resource describes symptoms, diagnostic tests and treatments for people with Sjögren’s at risk of developing PH.
Still Have Pandemic Questions? Get Answers From Our Experts
Safety guidance evolves as COVID-19 infection rates drop in some communities but new variants ravage others. If you’re confused by seemingly constantly changing information, you’re not alone. Get answers to your pandemic-related questions in a new Pulmonary Hypertension Association webinar.
Insurance Marketplace Enrollment Still Open
A special enrollment period allows people to apply for or change marketplace health care coverage through Aug. 15. Even if you weren’t previously eligible for coverage through your federal or state exchange, you might qualify under new pandemic-related rules.
She Didn’t Expect to Turn 30. But PH Gave Her Strength
Alex Flipse was a young mom when she was diagnosed with idiopathic pulmonary arterial hypertension. She first noticed symptoms in 1998: She frequently felt fatigued but attributed it to chasing two toddlers while six months pregnant. Alex of Teceluma, California, originally shared her story in Pathlight magazine.
Get Help for Medication Refill Challenges
Did you know your specialty pharmacy can help you medication refill challenges? Don’t let billing, delivery or customer service issues add to your stress. Use the Pulmonary Hypertension Association feedback form to get help from specialty pharmacy to resolve challenges.
Help People With PH Survive and Thrive
Monica Penaranda didn’t let a pulmonary hypertension (PH) diagnosis stop her from living her best life. She recently shared her 23-year PH journey as part of the Pulmonary Hypertension Association (PHA)’s 30th anniversary celebrations. Monica reflects on how PHA’s research and patient support programs helped her transform her life.
Inspiring Hope Among Young Adults with PH
After attending the Pulmonary Hypertension Association (PHA) International PH Conference and Scientific Sessions in 2018, Janessa Curnow decided to become a PHA support group leader and started one in her hometown. Today Janessa leads a telephone support group for young adults with PH.
CEO Update: Help Us Spread Awareness for World PH Day
Join the Pulmonary Hypertension Association (PHA) and 80 organizations throughout the world in May for a global awareness campaign. Starting May 5 on World PH Day, help educate health care providers and the general public about pulmonary hypertension (PH). Share your PH journey to secure timely, accurate diagnosis and treatment everywhere in the world.
Study: PH Support Groups Are Good for Your Health
Your support group participation might improve your life more than you realize. A recently published study shows that support groups improve meaningful health-related outcomes, such as self-care, pulmonary hypertension symptom management, medication adherence and understanding related medical procedures.
Help Change the Lives of People With PH
Monica Penaranda thought her life was shattered when a pulmonary hypertension (PH) diagnosis ended her days of cheerleading, track and varsity softball. Instead, she reconfigured her life goals. Twenty-three years later, Monica, a member of the Pulmonary Hypertension Association (PHA) Board of Trustees, is the face of PHA’s spring fundraising campaign.
Scholarships Available for People With Rare Diseases
Apply by May 7 for a $5,000 scholarship from the EveryLife Foundation for Rare Diseases. Thirty-five scholarships are available for the fall 2021 semester. The scholarships are open to people 17 and older with rare diseases, including non-traditional students.
Act Now: Urge Congress to Support Safe Step Act
Ask your members of Congress to support legislation that protects your access to therapy prescribed by your pulmonary hypertension (PH) doctor. The Safe Step Act would require insurance companies to cover your prescribed PH treatment, not a cheaper alternative.
Beating the Odds and Living Life to the Fullest
When Donna Head was diagnosed in 1988, there were no pulmonary hypertension medications. She had to undergo a right heart catheterization every six weeks to make sure her calcium channel blockers were still working.
PHANews.org, a publication of the Pulmonary Hypertension Association (PHA), is the trusted source of up-to-date news, community events listings and lifesaving information about pulmonary hypertension for patients, families and caregivers, healthcare professionals and supporters.
World PH Day Raises Awareness of Pulmonary Hypertension’s Global Impact
Members of the world PH Community will come together May 5 to share their stories,
Early Diagnosis, Prompt Treatment Offer Hope for Those With Rare Form of Pulmonary Hypertension
November 13 is CTEPH Awareness Day Silver Spring, MD (November 8, 2019) – As
Pulmonary Hypertension Awareness Month Draws Attention to Life-Threatening, Often Misdiagnosed Disease
The Pulmonary Hypertension Association’s ‘PHaces of Hope’ campaign shares stories of those with PH,
Study: PH Support Groups Are Good for Your Health
Your support group participation might improve your life more than you realize. A recently published study shows that support groups improve meaningful health-related outcomes, such as self-care, pulmonary hypertension symptom management, medication adherence and understanding related medical procedures.
FDA Approves First Drug for Group 3 PH
The FDA recently approved Tyvaso (treprostinil) Inhalation Solution to improve exercise ability for people who have PH associated with interstitial lung disease. Manufactured by United Therapeutics, Tyvaso is the first FDA-approved treatment for Group 3 PH.
PHA Names Research Award Recipient
Vineet Agrawal, M.D., Ph.D., is the 2020 recipient of the Pulmonary Hypertension Association’s Aldrighetti Research Award for Young Investigators. Dr. Agrawal is a physician-scientist and instructor of medicine at Vanderbilt University Medical Center.
How Does Body Weight Affect PAH?
A new article based Pulmonary Hypertension Association Registry (PHAR) data suggests body weight plays a complex, important role in pulmonary arterial hypertension (PAH). The article, which recently was published in the Annals of the American Thoracic Society, investigated the effects of patient weight on day-to-day activities.
Find Out the Latest in PH Research
Learn about the latest discoveries in pulmonary hypertension (PH) research. Join the Pulmonary Hypertension Association (PHA) at 3 p.m. EDT, Oct. 9 for “Advancements in PH Research.” Dr. Todd Bull will provide an update on the scientific discoveries and research that could lead to the next generation of PH therapies.
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