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.

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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.

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.

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.

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PH Research

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.

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