For patients, families, caregivers and health care professionals
The Right Heart
Decreasing Lung Pressure Gives Hope a Year After Diagnosis
Uraiwan Campbell went to urgent care for what she thought was an infected scratch on her leg. But after several days in the hospital and many tests, she learned her swollen leg was related to pulmonary hypertension. A recent heart catheterization showed her lung pressure has declined, buoying her spirits.
Pump Life is Tough. But Family, Friends and Hot Sauce Help Patient Stay Positive
Chloe Merritt, 22, is still getting used to a low-sodium diet, lack of energy and the challenges of a subcutaneous pump after her September 2022 diagnosis. But the life-changing experience has brought her closer than ever to family and friends. And it led her to a new favorite food. Chloe shares her positive outlook in the Right Heart Blog.
Familial PAH Affects 4 Generations
Whitney Whited was 10 when her father died of pulmonary arterial hypertension (PAH) complications. Recently, she learned about the BMPR2 gene and sought genetic testing for her 11-year-old daughter. Whitney, 34, who doesn’t have PAH, shared her family’s story in the winter 2022 issue of Pathlight, the Pulmonary Hypertension Association’s member magazine.
Retiree Stays Active as She Adapts to CTEPH
Joyce Sandberg of Port St. Lucie, Florida, noticed shortness of breath nine years ago while biking. A few years later, she developed blood clots and chronic thromboembolic pulmonary hypertension. But she doesn’t let her conditions stop her from enjoying life, taking cruises and attending classic car shows with her husband.
CTEPH Patient Finds Community Through PHA Facebook Group
Karly Loree, 30, felt isolated after her chronic thromboembolic pulmonary hypertension (CTEPH) diagnosis. But when she discovered a Pulmonary Hypertension Association support group for people with CTEPH, she found support, hope and community. As she awaits surgery this month, she shares her story for the Pulmonary Hypertension Association’s end-of-year fundraising campaign.
How a New Jersey Support Group Leader Honors Her Late Son
Bonnie Patricelli memorializes her son Ryan Juntti through her volunteer work for the Pulmonary Hypertension Association (PHA). She and Ryan revived PHA’s South Jersey Support Group in 2008, and she continues to co-lead the group since Ryan’s 2015 death. Bonnie’s story appears in the fall issue of Pathlight, PHA’s quarterly member magazine.
Join the Liu Family in Supporting PHA
The Liu family was vacationing in the Netherlands in 2012 when their 2-year-old daughter, Esther, had a heart attack. Two days later, she was diagnosed with pulmonary arterial hypertension, with an unknown cause. Since then, she has received a double lung transplant and travels all over the world with her mother Michelle, a physician and Pulmonary Hypertension Association (PHA) board member, to share their PH journey. Dr. Liu, shares that story as part of PHA’s fall fundraising campaign.
Former Teacher Finds Meaning as Support Group Leader
Becoming a support group leader has added meaning to Les Freeman’s life. The former teacher says being a support group leader is much like preparing lessons: He tries to blend education along with socialization. Les, who leads the Central Oregon PHA Support Group with his wife Michele, shares his story with the Pulmonary Hypertension Association’s Right Heart Blog.
CEO Update: Find New Inspiration for Patient Care at PHPN Symposium
Registration opens Friday for the Pulmonary Hypertension Association (PHA) PH Professional Network Symposium. If you’re a doctor, nurse or other health care professional who cares for people with pulmonary hypertension, sign up to learn the latest science about PH. Your patients will be the ultimate beneficiaries of your attendance. Learn more about this invaluable opportunity, set for Sept. 28-30 in Arlington, Virginia.
How Expiring Pandemic Measures Will Affect Health Care Benefits
Federal measures implemented at the beginning of the COVID-19 pandemic are expected to end in May. That means many people won’t be eligible for health care benefits they received during the pandemic.. Discover how Medicaid and Medicare coverage will be affected.
Join Us in San Diego for Our Next Free PH Community Workshop
If you live on the West Coast, join us May 6 in San Diego for the Pulmonary Hypertension Association (PHA)’s first free regional workshop under a new name. The events previously known as PHA on the Road are now called PHA PH Community Workshops. The next event will be July 29 in the Boston area.
How Do You Cope With PH? Join a Support Group for Connections and Resources
Estella Medina couldn’t do much physically when she was diagnosed with pulmonary hypertension. She depended on her husband, children, parents and sister for help at home. The family’s assistance was critical at a time when Estella’s disease was difficult to manage. But she found something equally beneficial to help her cope: Pulmonary Hypertension Association support groups.
Join PHA for Multi-Year Membership Discounts
Pulmonary Hypertension Association (PHA) members have a new way to manage their membership dues – and get discounted rates. PHA is now offering multi-year membership enrollment, which means you can sign up for several years at once. The more years you enroll, the greater your discount will be.
Researchers: Apply for PHA Research Grants
The Pulmonary Hypertension Association (PHA) encourages pulmonary hypertension professionals to apply for two research grants. They are: Early Career Mentored Scientist Award ($65,000 for one year) and Innovation Research Award ($60,000 a year for two years).
How Can the Inflation Reduction Act Help You?
The Inflation Reduction Act provides cost-relief benefits to people with Medicare plans. Learn when changes will go into effect and how you might benefit from the law.
Tampa Walk Raises $20K for PHA
The pulmonary hypertension community raised more than $20,000 in the fifth annual Tampa O2breathe Walk and 5K. The Feb. 18 event was held in memory of Missy Stok Rizzo, who died in 2018.
Symposium to Feature Session on Mental Health and Wellness
The Pulmonary Hypertension Association (PHA)'s PH Professional Network (PHPN) Symposium will include a session on wellness and mental health for pulmonary hypertension (PH) providers and patients. The event is Sept. 28-30 in Arlington, Virginia. Registration opens this month.
Get Help Resolving Specialty Pharmacy Challenges
If you have prescription refill, billing or other challenges related to your specialty pharmacy, the Pulmonary Hypertension Association (PHA) can connect you to the right people.
Support Group Leader Advisory Board Names New Member
The Pulmonary Hypertension Association (PHA) welcomes Doug Taylor to its Support Group Leader Advisory Board. Doug, who was diagnosed in 2003, has led the Midlands-Columbia group in South Carolina for 16 years. Doug is known for celebrating each day. “If we make each day a holiday and celebrate, it makes our life fuller,” Doug says.
Houston PH Community Raises $19K for PHA
Rain didn’t stop the Houston-area pulmonary hypertension (PH) community from raising more than $19,000 at its first O2breathe walk. The Jan. 28 at Buffalo Bayou Partnership Water Works-Brown Foundation celebrated participants, patients and top fundraisers.
Was AmazonSmile Your Preferred Way to Support PHA? Try this alternative
Amazon is ending its AmazonSmile donation program, which many Pulmonary Hypertension Association (PHA) supporters took part in. If you'd like to continue supporting PHA programs through everyday purchases, consider using our new "round-up" feature for online giving.
Cincinnati PH Specialist Receives Pediatric Research Award
Paul Critser, M.D., Ph.D., has received the Pulmonary Hypertension Association Pediatric PH Research Award.
All Nationwide PHA Support Groups Now Online
The Pulmonary Hypertension Association recently merged its telephone support groups with its nationwide support group program. All nationwide support group meetings are now conducted through Zoom. The online meetings allow people with shared experiences or interests to connect wherever they live.
PHA Journal Address Conditions Related to PH
The latest issue of Advances in Pulmonary Hypertension addresses associated diseases that can lead to pulmonary hypertension (PH). Advances is the Pulmonary Hypertension Association’s quarterly peer-reviewed clinical journal.
PHA Support Groups Share Holiday Celebrations
Pulmonary Hypertension Association support groups came together for holiday cheer, many for the first time since the pandemic. Get a glimpse of the celebrations in this round-up. Read more and browse the photos.
Share Your Story for American Heart Month
Spread pulmonary hypertension (PH) awareness by sharing your story for American Heart Month in February. Heart disease can lead to PH or exacerbate symptoms. Help us call attention to the importance of cardiovascular health. Share how you manage your PH and heart disease or your tips for improving heart health.
Ask New Congress to Support PH Issues
Now that the 118th Congress is in session, the Pulmonary Hypertension Association urges Congress to work across the aisle. We need bipartisan legislation to improve health care for people with pulmonary hypertension and other serious and chronic health conditions.
Find Resources for Copay Assistance
The new year can be challenging for finding financial assistance for pulmonary hypertension (PH) medications. Although charitable assistance foundations with PH funds currently are closed, other avenues for assistance are available. Visit the Pulmonary Hypertension Association’s financial assistance page for more information.
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.
Press Release: November is PH Awareness Month
The Pulmonary Hypertension Association’s “PHacing the Future Day by Day” campaign strives to educate people about pulmonary hypertension.
Press Release: Pulmonary Hypertension Education Workshop, PHA On the Road, Comes to Louisville on Sept. 17
PHA On the Road is a free one-day event that offers educational sessions on pulmonary hypertension (PH). Presented by local medical experts and patients, the event provides networking opportunities for people living with PH.
Advisory: Reproductive Health and Pulmonary Hypertension
Pregnancy is considered high risk for people with pulmonary hypertension because their heart and lungs can’t easily adjust to the demands of pregnancy and childbirth.