PHA News – for patients, families, caregivers, and healthcare professionals
The Right Heart
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.
Emergency Prep: Surviving Poor Air Quality
Evans Wilson and his wife Alicia were recently affected by the smoke from the wildfires that raged through the West Coast. Evans was diagnosed with pulmonary arterial hypertension (PAH), pulmonary fibrosis (PF) in October 2014 and chronic thromboembolic pulmonary hypertension (CTEPH) in December 2016. This is his story.
Pastoring in a Pandemic and Finding Resilience
Diana Lewis, 57, lives in Rio Rancho, New Mexico, with her husband of 28 years, Adrian, and her son Joshua, 29, who has autism spectrum disorder. Diana, a pastor, taught pre-K and elementary school for 14 years. She was diagnosed with pulmonary hypertension (PH) five years ago. She shares her story about dealing with the pandemic.
Newly Diagnosed and Persevering
Lisa Laughlin was terrified after her husband Michael fell and passed out in 2017. He had been short of breath for more than a year and no longer had energy for his nightly walks. His diagnosis of a disease they’d never heard of was equally frightening.
Advocate Undaunted by Lupus and Lung Disease
Rosemary Graham, of Atlanta, Georgia, is a long-time advocate for people with rare and chronic diseases. She was diagnosed in 2012 with pulmonary hypertension (PH) related to lupus, pulmonary fibrosis and sleep apnea. This is her story.
Devastating Diagnosis Doesn’t Keep Veteran From Pursuing Dreams
Aisha Woods Zarb-Cousin lives in San Antonio, Texas with her husband Adam, her 13-year-old stepdaughter Zion, and their dog Zoe. She retired from the Air Force in 2010 after seven years of active duty service. This is her story.
PH Upends Housewarming, Holidays and Young Mother’s Health
“Processing my diagnosis alone in the NICU was rough. I didn’t really understand the gravity of it all. It didn’t feel real.” Amy Dolan, 30, lives in western Rhode Island with her husband and four children, Gehrig, Eila, Finley and Theodore. Before
Born with Collapsed Lung, 36-Year-old Awaits Double Lung Transplant
“It was heartbreaking to leave our biggest supporters, but my family kept their faith strong.” By Jessica Romero I was born Oct. 26, 1983, at Denver General Hospital, now known as Denver Health, in Colorado. I was born three months prematurely and
Featured News
New Pulmonary Hypertension Assistance Fund Opens
The HealthWell Foundation launched a pulmonary hypertension (PH) assistance fund Monday, January 11. The fund is open to Medicare recipients, including those with Medicare Advantage plans. Assistance grants can be used to cover the premium costs of purchasing Medicare coverage or to cover copay expenses for PH medication.
PHA Welcomes New Beginnings in 2021
As we enter 2021, the Pulmonary Hypertension Association (PHA) welcomes important milestones and new beginnings. The new year marks the start of PHA’s 30th anniversary, the launch of COVID-19 vaccines in the United States and signs of an eventual return to post-pandemic life. In this remarkable time, I am delighted to join PHA as its third president and CEO.
PH Advocates Help Pass No Surprises Act
The pulmonary hypertension (PH) community’s efforts led to an advocacy victory for people with chronic health care conditions. On Dec. 28, Congress passed the No Surprises Act, which ends surprise medical billing for some out-of-network services.
New Advances Issue Focuses on High Altitude and PH
The newest issue of Advances in Pulmonary Hypertension, official journal of the Pulmonary Hypertension Association, was guest-edited by Todd Bull, M.D., and explores the effect of high altitude on pulmonary function. In his “Guest Editor’s Memo,” Dr. Bull acknowledges “the satisfaction and joy of ascending our high peaks,” but notes that high altitude affects pulmonary arteries and lung function.
PHA Announces New Live Programming and PHA News Schedule
A new monthly series of live programs about pulmonary hypertension (PH) and wellness begins this month. The first program is a Jan. 29 Facebook Live Q&A on COVID-19 vaccines. Also starting this month, PHA News will come to your inbox every other week instead of every week.
Fulfill Your New Year’s Resolution to Volunteer
Janet Mabe of Murrells Inlet, South Carolina, is among the volunteers who answer the PHA Support Line. Volunteers share their own experiences, listen and connect callers to helpful resources. “I just love it when a caller understands that it's okay to love living a good, healthy, enjoyable life and set aside the fear of death,” she says.
Help PHA Fulfill its Mission
The Pulmonary Hypertension Association (PHA) reached thousands of people in 2020 through education, support and research programs, thanks in large part to donations and grants. PHA is grateful for your generous annual support. Learn how you help PHA continue its work in 2021.
Share Your Vision as We Begin PHA’s 30th Anniversary Year
As we head into the Pulmonary Hypertension Association (PHA)’s 30th anniversary year, we want to hear from you. What do you envision for the future? What are you looking forward to most in 2021? Share your vision and hopes for the years ahead, and we’ll share your thoughts with the community as we celebrate our 30th anniversary throughout 2021.
Top 10 PHA News Stories of 2020
More than half the top stories in PHA News this year were COVID-19 related, reflecting your concerns and need for information and resources about the pandemic. The most popular article was a letter from the chairof the Pulmonary Hypertension Association’s Scientific Leadership Committee after the public health emergency was declared.
Top 10 Social Media Posts of 2020
This year’s most popular Pulmonary Hypertension Association social media posts promoted Pulmonary Hypertension Awareness Month, Rare Disease Day and World PH Day, informative graphics, and educational programs. PHA is thankful for everyone who engages with our social media content, and we look forward to hearing from you in the new year.
Oklahoma Community Gathers Online to Fight PH
An annual Oklahoma City fundraiser for the Pulmonary Hypertension Association (PHA) brought the community together virtually this year. The Nov. 21 Right Heart Fight raised money for the fifth straight year for PHA’s support, education and research programming.
Discover PHA’s CTEPH Resources
Learn about a particularly rare form of pulmonary hypertension (PH) known as chronic thromboembolic PH (CTEPH), which is caused by old blood clots in the lungs.
CEO Update: Empowered by Hope
In this, my last update as CEO of the Pulmonary Hypertension Association (PHA), I want to express my appreciation to everyone who helped advance PHA’s mission over the past four and a half years, as well as my gratitude for having had the privilege to serve this great organization and community and to have enjoyed the support and wisdom of the PHA Board of Trustees.
New FAQ on COVID-19 Vaccines, Tests and Treatment
Throughout the COVID-19 vaccine approval and distribution process, the Pulmonary Hypertension Association (PHA) will address questions and concerns from the pulmonary hypertension community. See our new Frequently Asked Questions about the vaccine, tests and treatment.
Why I Volunteer as an Email PHriend
Krista Cummings, of Richmond, Virginia, remembers her fear and feelings of helpless after her 2009 idiopathic pulmonary arterial hypertension diagnosis. So she volunteers as a Pulmonary Hypertension Association (PHA) support group leader and Email PHriend.
Take Care of Your Mental Health During the Holiday Season
If you feel increasing anxious or depressed as the holidays approach, you’re not alone. And challenges related to pulmonary hypertension (PH) and/or the pandemic can exacerbate those feelings.
PHA Connects Newly Diagnosed with Longtime Survivors
Laura Peaceman felt no one understood what she was going through after she was diagnosed last year with pulmonary arterial hypertension. She joined the Pulmonary Hypertension Association (PHA), which paired her with Lilly Safley through PHA’s Email Phriends program. Since then, Lilly has helped Laura cope with changes and shared important questions to ask her doctor, tips to conserve energy and diagnosis-related insight.
Why PHA Needs Your Support More Than Ever
Since March, PHA has provided support for pulmonary hypertension (PH) patients and caregivers through virtual support groups and its PHA Connects wellness series. As PHA continues its mission to improve and extend the lives of those affected by PH, your support is more critical than ever.
Awareness Month Engages Wide Audience
Pulmonary Hypertension Awareness Month wrapped up last week, ending a month of activities, information and engagement to help people “Discover PH.” Our Awareness Month activities attracted thousands of visitors, and our most popular web page was the PH Awareness Month Calendar.
#GivingTuesday Donations Set Record
Thank you to everyone who donated, shared and supported the #GivingTuesday campaign. Your donations make it possible for us to do our work. And your support helps us meet our mission of extending and improving the lives of all those affected by PH.
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,
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.
How to Maximize Your Support for PH Research and Awareness
Does your employer have a matching gift program? If so, you can double your contribution to the Pulmonary Hypertension Association (PHA). Depending on the employer, you might be eligible to provide twice the support for the pulmonary hypertension (PH) community, whether you’re an employee, spouse of an employee or retiree.
Discover Patient and Researcher Perspectives on PH Drug Development
Would you like to learn more about the process of developing new drugs to treat pulmonary hypertension (PH)? Check out the latest issue of the Pulmonary Hypertension Association’s (PHA’s) official journal, Advances in Pulmonary Hypertension, now available online.
Jason Boehme Awarded Grant to Fund Study in Pediatric PAH
Jason Boehme, M.D., received the 2019 PHA Robyn J. Barst, M.D. Pediatric PH Research & Mentoring Grant in honor of Jackson Wall, one of three Pulmonary Hypertension
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