PHA News – for patients, families, caregivers, and healthcare professionals
The Right Heart
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
19 Years After Diagnosis: Keeping Fit and Staying Hopeful
“I wanted to give up, but with lots of prayers and faith, I eventually started improving.” By Lorraine Polston Lorraine Polston of Amarillo, Texas, was diagnosed with idiopathic pulmonary arterial hypertension (PAH) in 2001. A registered nurse since 1992, she and her
Featured News
No Sneakers Needed for Philadelphia O2breathe Walk
This year’s Pulmonary Hypertension Association (PHA) Philadelphia O2breathe Walk is a virtual celebration of the PH community’s fundraising efforts. Join us online at 11 a.m. EDT Saturday for live team recognition, inspirational messages and interactive engagement.
Read ‘PH in a Pandemic’ and Other Great Stories in Pathlight
If you’re a member of the Pulmonary Hypertension Association (PHA), the latest issue of Pathlight should have arrived in your mail. The August issue of PHA’s quarterly magazine addresses “PH in a Pandemic,” research breakthroughs and inspirational stories from people with pulmonary hypertension (PH) and their loved ones.
Affected by wildfires or flooding? Share Your Emergency Experience
Do you live in an area affected by recent wildfires, hurricanes or other emergency situations? How did the disaster affect your pulmonary hypertension (PH)? Let the PH community know how you’re managing and what precautions you took. Share your experience in the Pulmonary Hypertension Association’s Right Heart Blog.
Blood Donation Campaign Features PH/Sickle Cell Advocate
PHA board member Nicole Creech is helping raise awareness this month for sickle cell disease. Nicole, of Lexington, Kentucky is part of a campaign to encourage African American and Hispanic people to donate blood during Sickle Cell Awareness Month.
Oregon Doctor Shares Air Quality Precautions
People with pulmonary hypertension (PH) are vulnerable to the effects of hazardous air quality. Pulmonologist Wayne Strauss, M.D., Ph.D., offers tips to reduce the risks of particulate-matter exposure.
Help Determine How Donor Lungs are Distributed
The scoring system for allocating donor lungs is under review. You can weigh in on how donor lungs are distributed by taking a 10- to 15-minute survey from the Organ Procurement and Transplantation Network. The Pulmonary Hypertension Association (PHA) encourages people with pulmonary hypertension, their loved ones and health care teams to participate.
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.
Former Runner Goes the Distance to Advance PH Research
Nick Simons ran 25 to 30 miles a week until 2008. A particularly disappointing run led to a doctor’s visit, tests and a pulmonary hypertension (PH) diagnosis. Eventually, he started contributing to the Pulmonary Hypertension Association (PHA) through payroll deductions.
Get Social! Join a PHA Facebook Group
Essential social support during the COVID-19 pandemic is possible thanks to the Pulmonary Hypertension Association (PHA)’s eight Facebook groups. Pam Kehoe of Wisconsin, who joined the CTEPH group after her diagnosis, shares how the group provides her with a supportive space to exchange stories, news and concerns.
8 Tips to Get Your Child With PH Ready for School
As a new school year begins amid the COVID-19 pandemic, deciding whether to send children back to the classroom can be difficult. Three pediatric pulmonary hypertension (PH) specialists share considerations to help you decide what’s best for your child.
Do You Have the FAQs About COVID-19 & PH?
Discover links to back-to-school guidance and more answers to your COVID-19 concerns. The Pulmonary Hypertension Association recently updated its frequently asked questions to help you maintain your health, prevent virus transmission and exposure, and manage stress and anxiety during the pandemic.
‘Lucky to be Alive’ and Inspired to Give Back
Lauri Stanfield donates to the Pulmonary Hypertension Association (PHA) in honor of the people who inspire her: fellow PH patients. “I’m lucky to be alive,” Lauri says. “That’s why I give back to PHA. Some of the best people I’ve ever met in the world are PH patients. I know that my gifts honor them.”
New Professional Development Courses Online
One of the ways the Pulmonary Hypertension Association (PHA) promotes quality patient care is through free education courses for health care professionals. Several new courses have been added to the PHA Online University, a digital platform for continuing medical education.
6 Steps to Join a Virtual Support Group Meeting
Social support is essential while the COVID-19 pandemic physically keeps people distant. The Pulmonary Hypertension Association’s virtual support groups help you connect, learn and have fun.
Add These Tactics to Your Emergency Checklist
Many people in the pulmonary hypertension community are preparing for power outages and other issues related to Hurricane Laura and wildfires in California. Discover resources and tips from the Pulmonary Hypertension Association that apply to many emergency situations.
10 Tips to Reinvent Your Vacation Plans
Sharon Horning was looking forward to two concerts and a big car show this summer. When the pandemic forced her to revamp her plans, she took on a massive new project. Find out how Sharon and other members of the pulmonary hypertension community are making the most of summer and fall despite distancing.
Resources for Copay Assistance Due to COVID-19
Struggling with your copays and other medical costs due to the COVID-19 pandemic? Discover copay assistance resources for people with pulmonary hypertension. Find available grants and manufacturer programs on the Pulmonary Hypertension Association website.
Applications Open for Aldrighetti Research Award
The Pulmonary Hypertension Association is accepting applications for the Aldrighetti Research Award for Young Investigators. The research grant supports the work of promising young investigators interested in research in pulmonary arterial hypertension.
4 Reasons Why You Should Join the Sustainers Circle
Join the Pulmonary Hypertension Association’s (PHA’s) monthly giving program to make a difference for the pulmonary hypertension (PH) community. Members of the Sustainers Circle provide support throughout the year to keep hope alive for everyone in the PH community.
Contact Congress: Help End Surprise Medical Bills
When someone with PH seeks medical care, they should be confident about what their health insurance will cover. But more than half of adults surveyed in the U.S. say they or a family member have received an unexpected medical bill. Urge your senators and representatives to support comprehensive legislation to protect people from surprise medical bills for all diseases in all care settings.
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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