PHA News
For patients, families, caregivers and health care professionals
The Right Heart
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.
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.
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
Taking Life a Day at a Time a Year After Diagnosis
Debra Gonzales, 66, is a just a year into her pulmonary hypertension journey. After a recent doctor visit, she learned her arterial pressure had declined and her heart function had improved. Her pulmonary arterial hypertension doesn’t stop her from spending time with her daughter, mother-in-law, friends and her dog in Redondo Beach, California.
Hole in Heart Leads to PH Diagnosis
Doctors weren’t sure Lillian Cooke would survive the night they discovered her pulmonary arterial hypertension. Three years later, the stay-at-home mom spends time with family and friends, painting, playing video games and listening to music.” I hope my story gives someone else hope,” Lillian writes in the Pulmonary Hypertension Association’s Right Heart Blog. “I will never lose hope, and I’m going to keep fighting until my last breath.”
Dancing Through Life with PH
Pam Vinesett of North Carolina served three years of active duty and 17 years in the army reserves. The mother of seven and grandmother of eight enjoys swimming, fishing and tubing with her husband. In 2014, she noticed shortness of breath and other pulmonary hypertension symptoms. Since her eventual diagnosis and other health challenges, she is doing well and teaches four to six Zumba classes a week.
Featured News
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.
PHPN Symposium to Feature Lead Author of New PH Guidelines
Pulmonary hypertension (PH) health professionals can meet the primary author of recently released PH guidelines at the PH Professional Network Symposium. Dr. Marc Humbert will discuss the new PH guidelines during the Sept. 28-30 PHA event in Arlington, Virginia. The guidelines, developed by a taskforce from the European Society of Cardiology and European Respiratory Society, were published in August 2022.
PH Professionals: Check Out Genetics and PH Courses on PHA Online University
The Pulmonary Hypertension Association added three new courses on Genetics and PH to its Online University. Watch the videos to earn 2.75 continuing education credits.
CEO Update: Seeking New Possibilities in a New Year
While the world seems to have moved on from the pandemic, many in the pulmonary hypertension community are trying to catch up. Because PH makes people more vulnerable to serious COVID side effects, the community remains cautious about how to proceed. This year, the Pulmonary Hypertension Association wants to help you transition from pandemic mode to more familiar routines.
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.
Apply for new PHA Research Grant
The Pulmonary Hypertension Association is accepting applications for a new grant to support junior pulmonary hypertension researchers. Apply now, or spread the word about PHA’s Early Career Mentored Scientist Award. The one-year grant covers up to $65,000 for PH-related research projects that have been favorably reviewed but not funded by the National Institutes of Health. Apply by March 20.
Fulfill a New Year’s Resolution: Become a PHA Support Volunteer
The Pulmonary Hypertension Association seeks empathetic volunteers eager to support their peers in the pulmonary hypertension community. As the year begins, we have several volunteer shifts for our in-person, phone and online support services. Tiffany Gunville of Minot, North Dakota, encourages others to get involved. “Others were there for me. Now it’s my turn to give back.”
Recall of CADD Infusion Systems Impacts Many PH Patients
A manufacturer recall of specific lots of CADD infusion systems recommends against using the affected systems for life-sustaining medication including brand and generic treprostinil (Remodulin) and epoprostenol (Veletri, Flolan).Patients contacted by their specialty pharmacy or PH care team about the issues described below should follow the provided directions immediately.
Top PHA News Stories in 2022 Address Treatment Costs, Return to Normalcy
The high cost of pulmonary hypertension treatment was top of mind in 2022, according to the highest-clicked stories in PHA News this year. At least three stories in our top 15 addressed financial assistance and medical bills, including “6 Sources of Financial Assistance.”
Discover PHA’s Top Social Media Posts of 2022
This year’s most popular Pulmonary Hypertension Association social media posts promoted World PH Day, PH Awareness Month, patient stories, community events and more. We are thankful to the pulmonary hypertension (PH) community for engaging with our social media content. Every comment, like and share raises PH awareness.
Renew Your PHA Membership
As the year ends, take a moment to check your Pulmonary Hypertension Association membership status. Renew your membership to take advantage of exclusive member benefits, including quarterly issues of Pathlight magazine, network-building, discounted conference registration and more.
Thank You to Our Volunteer Support Group Leaders
The Pulmonary Hypertension Association (PHA) recently showed appreciation for its support group leaders with a virtual holiday party. The party featured two videos: One that features PHA staff and members of our Support Group Leader Advisory Board and a roll call of support group leaders’ names. See the videos.
Read “Finding Hope Through Devastation” and Other Inspirational Stories in Pathlight
The winter 2022 issue of Pathlight deals with growth. This issue’s articles recount the many ways the pulmonary hypertension community has grown as patients manage their disease. Discover inspiration from volunteers, advocates, fundraisers and young parents confronting loss and PH. These stories are available only in Pathlight magazine, a benefit of your PHA membership.
PHA Names 2022 PHA Innovation Research Awardee
Csaba Galambos, M.D., Ph.D. is the first recipient of the Pulmonary Hypertension Association (PHA) Innovation Research Award. Dr. Galambos is the director of pediatric pulmonary research at Children’s Hospital Colorado. His research seeks to understand lung vascular development to develop new strategies for earlier diagnosis, prevention and potential cures for infants and children with pulmonary disease and PH.
PH Awareness Month Resources Reach Nearly 300,000 in November
Throughout November, the Pulmonary Hypertension Association educated people about risk pulmonary hypertension risk factors and symptoms. Our award-winning interactive PH Awareness Month calendar received more than 3,000 visits in November, and our social media posts reached 285,435 people, garnering more than 8,000 comments, likes and shares.
Matching Gift Inspires Increased Monthly Donations
Thanks to the GivingTuesday donations, we can support more people with pulmonary hypertension (PH). Your donation helps the Pulmonary Hypertension Association promote PH awareness, support research and ensure earlier diagnosis. This year, a $10,000 matching gift inspired many to join or upgrade their Sustainers Circle monthly contributions.
Prevent Treatment Disruptions in the New Year
Is your insurance changing in 2023? If so, make sure to update your care team and specialty pharmacy. Give your health care team plenty of time to tackle potential obstacles by notifying them right away of any insurance changes. Don’t wait till the new year.
Thank you for Advocating for Improved Oxygen Access
Thanks to the pulmonary hypertension (PH) community for participating in this year’s PH Awareness Month Day of Action. People with PH and their loved ones answered the Pulmonary Hypertension Association’s call to sign a petition to improve access to supplemental oxygen.
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.
Avenues to Adoption: PH and Paths to Parenthood
Three months before Kellie and Paula Tasto got married, Kellie learned that she had pulmonary hypertension (PH). She was critically ill with severe right heart failure, and
My Miracle Baby: A Story of Surrogacy
Skye Ellison will never forget the day she found out she and her husband and I were going to have a baby. Their fertility clinic called to let them know their surrogate’s pregnancy test had come back positive. After almost a lifetime of hearing, “You won’t be able to have children,” Skye felt like she had achieved the impossible.
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.
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.
PHPN Symposium to Feature Lead Author of New PH Guidelines
Pulmonary hypertension (PH) health professionals can meet the primary author of recently released PH guidelines at the PH Professional Network Symposium. Dr. Marc Humbert will discuss the new PH guidelines during the Sept. 28-30 PHA event in Arlington, Virginia. The guidelines, developed by a taskforce from the European Society of Cardiology and European Respiratory Society, were published in August 2022.
