PHA News – for patients, families, caregivers, and healthcare professionals
The Right Heart
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
Georgette Recognized a Rare Catch on the Volleyball Court. His Rare Diseases Spiked Later
“As Dean’s illness progresses, living each and every day is precious. We don’t take it for granted.” Georgette Bridger and her husband of 27 years, Dean, live in Suffolk, Virginia. Together they have four children and a dog Annabell. Dean was
Featured News
Help Others ‘Discover PH’
Pulmonary Hypertension (PH) Awareness Month continues this week with shareable graphics and interactive tools to raise awareness of the common causes and often misdiagnosed symptoms of PH.
Get the Support You Need Without Leaving Home
Remote support group meetings help the community remain connected, supported and informed – without the risk of transmitting or contracting COVID-19. Although virtual meetings lack the magic of in-person support, they have other advantages.
How Do You Cope With COVID-19 While Using Oxygen?
COVID-19 has raised many questions for oxygen users. They range from the practical – how do you fit so many things behind your ears – to critical health concerns, Your peers weigh in with advice.
Learn More About the Link Between PH and Meth
A new manuscript based on Pulmonary Hypertension Association Registry (PHAR) data examined "Clinical Differences and Outcomes between Methamphetamine-Associated and Idiopathic Pulmonary Arterial Hypertension." The study by Nicholas Kolaitis, M.D., and colleagues recently was published in the Annals of the American Thoracic Society.
4 Ways to Support PHA
When you donate to the Pulmonary Hypertension Association (PHA), your gift makes a difference in the lives of those affected by pulmonary hypertension (PH). PHA makes it easy to give in the way that works best for you. Discover some ways you can give a gift of hope to support PHA.
Act Now to Ensure On-Time Prescription Refills in January
If your insurance coverage is changing in January 2021, act now to make sure your first medication refill of the new year arrives on time. Discover three tips to avoid delays with prior authorization, step therapy requirements, co-pay assistance and related issues.
Spread Awareness, Not Germs
Pulmonary Hypertension Awareness Month continues with more digital downloads from the Pulmonary Hypertension Association’s Awareness Month Calendar. Today’s download helps you spread awareness – but not germs – by making a colorful statement. Check the calendar each day to find out what’s new, and catch up on what you’ve missed.
Join the Dallas/Fort Worth Community for Virtual ZebraPHest
It’s not too late to participate in the 14th annual Pulmonary Hypertension Association (PHA) ZebraPHest. The Dallas/Fort Worth community’s virtual fundraising starts at 11 a.m. CST Saturday, Nov. 14.
‘Ask the Experts’ at Our Facebook Live Events
Help spread pulmonary hypertension (PH) awareness by joining the Pulmonary Hypertension Association (PHA) for Facebook Live events in English and Spanish. First up is “About PH” at 7 p.m. EST Wednesday, Nov. 18 (Spanish) and Friday, Nov. 20 (English). “PH and Meth” is scheduled for Nov. 23 at 3 p.m. EST in English and 2 p.m. EST Nov. 24 in Spanish.
New Videos Provide PH Diagnosis and Treatment Insight
People with pulmonary hypertension (PH) and their families have a new resource for information on PH. “PH 101” provides a comprehensive survey of diagnosis, classification and treatment options. The two-part video series is presented by Jean Elwing, M.D., director of the pulmonary hypertension program at UC Health in Cincinnati.
Let’s Raise Awareness This Month
Pulmonary Hypertension (PH) Awareness Month is in full swing. By now, the Pulmonary Hypertension Association has released several days of digital tools and resources through our Awareness Month Calendar. So far, we’ve released desktop and phone wallpaper, virtual meeting backgrounds and a graphic to raise awareness of the risk of chronic thromboembolic pulmonary hypertension.
3 Ways to Honor the PHight for PH
Consider honoring a member of the pulmonary hypertension community with a gift to the Pulmonary Hypertension Association (PHA). A tribute gift allows PHA to continue its vital education, support and research programs — and acknowledges someone special.
Help Others Discover PH With Our Toolkit and Interactive Calendar
November marks Pulmonary Hypertension Awareness Month, an important time for the pulmonary hypertension (PH) community. Discover the Pulmonary Hypertension Association’s tools to help educate the public, health care providers and elected officials about this rare, often-misunderstood disease.
Take Advantage of Workplace Giving Programs
Many PHA donors take advantage of their employers’ giving programs to maximize their impact and spread awareness about pulmonary hypertension. Whether you are an employee, retiree or spouse of an employee, use these workplace giving options to support PHA.
Marketplace Open Enrollment Begins Nov. 1
Open enrollment for the individual health insurance marketplace runs Nov. 1-Dec. 15. Coverage begins Jan. 1, 2021 and will be valid throughout the year.
Watch Out for Copay Accumulators and Other Hidden Insurance Risks
As you review your insurance coverage during open enrollment season, be aware of hidden practices that could raise your out-of-pocket costs. Watch out for plans that raise your out-of-pocket expenses and make money from copay cards and grants.
How Has the Pandemic Affected Your Holiday Plans?
COVID-19 has upended many plans to be home for the holidays. How do you to plan to change this year’s celebrations? Share with the PH community how you plan to safely celebrate the holidays this year in the Pulmonary Hypertension Association’s Right Heart Blog.
Submit Your Proposals for 2021 PHPN Symposium
The Pulmonary Hypertension Association (PHA) is accepting speaker proposal submissions for its 2021 PH Professional Network (PHPN) Symposium. "PHiguring Out the Puzzle: Pieces to Innovative, Patient-Centered Care" is set for Sept. 30-Oct. 2, 2021, in Arlington, Virginia.
Georgia Fundraiser Celebrates Sally Maddox
The Pulmonary Hypertension Association (PHA) recently conducted a virtual version of its Georgia PHA Fun Walk for a Cure. The Oct. 10 event was in memory of Sarah K. “Sally” Maddox, Ed.D, who founded the event 17 years ago.
Clowning Around for a Serious Cause
Making annual donations to the Pulmonary Hypertension Association (PHA) is no laughing matter for Fran Etzkorn of Longmont, Colorado. Fran, who was diagnosed with pulmonary hypertension (PH) in 2009, uses her passion for clowning to spread awareness about 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,
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
Research Room Brings Community Together to Advance PH Studies
Researchers who study pulmonary hypertension (PH) can apply now to advance their research at the PHA 2020 International PH Conference and Scientific Sessions, which brings the PH
Young Investigator’s Research Looks at Vascular Remodeling in PAH
Ke Yuan, Ph.D., received the 2019 PHA Aldrighetti Research Award for Young Investigators, with sponsorship support provided by Actelion Pharmaceuticals, U.S. The award, one of three Pulmonary
Research Fellow to Study How Inflammation Contributes to PH
Rahul Kumar, Ph.D., received the 2019 PHA/ATS Research Fellowship, one of three individual Pulmonary Hypertension Association research grants awarded last year, to study inflammation and how it contributes
Oxygen Survey May Lead to Better Technology and Advocacy
A team of Johns Hopkins University (Hopkins) engineering graduate students discovered the difficulties people with lung diseases experience accessing and obtaining portable oxygen equipment while shadowing Hopkins
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