The Pulmonary Hypertension Association (PHA) is promoting several events throughout November — the Pulmonary Hypertension (PH) Awareness Month. This year, people are encouraged to discover the risk factors and symptoms of PH, and the challenges faced by those living with the disease, and their families.
PH is often underdiagnosed and misunderstood, even among healthcare providers. Being aware of the disease’s risk factors may reduce misdiagnoses, advocates say.
There is a wide range of risk factors for PH, including other medical conditions such as connective tissue diseases, other lung disorders, or even drug abuse. Lung disorders that increase PF risk include chronic obstructive pulmonary disease, while connective tissue diseases such as scleroderma, which affect the tissues that support and hold organs together, also can be a factor.
“It’s critical for us to raise awareness of this rare and life-threatening disease,” Colleen Brunetti, PH patient and PHA Board of Trustees chair, said in a press release.
A monthlong online campaign will be held, aiming to bring awareness about PH to the general public, healthcare professionals, and members of the U.S. Congress. The campaign includes Facebook Live events, as well as advocacy and educational initiatives.
“Educating patients, families, the medical community and policymakers about the symptoms, treatments and challenges of living with PH is essential to improving outcomes and quality of life,” Brunetti said.
On each day of November, an interactive calendar will reveal a new fact or resource to help spread awareness about the disease.
A special focus is the Nov. 10 Day of Action, when people affected by PH will be invited to share their stories with the U.S. Congress. This initiative seeks to not only educate Congress about the impact of PH on people’s lives but also to promote patient advocacy among U.S. senators and representatives. More information on the different advocacy initiatives organized by PHA can be found here.
Several “Ask the Experts” sessions will be held throughout PH Awareness Month. These events aim to encourage people to ask questions of a vast panel of PH experts; they can be watched here or on the PHA’s Facebook page.
These sessions will start on Nov. 6 with Kristin Highland, MD, a PH specialist from Cleveland Clinic’s Respiratory Institute. In this session, questions about the connection between PH and connective tissue diseases will be discussed.
Particular attention will be paid to chronic thromboembolic pulmonary hypertension (CTEPH), a type of PH caused by blood clots in the lungs. On Nov. 11 — recognized this year as CTEPH Awareness Day — two dedicated sessions (one in English and the other in Spanish) will be conducted on Facebook. PH specialists Peter Hountras, MD, from the University of Colorado School of Medicine and Gustavo Heresi, MD, from Cleveland Clinic’s Respiratory Institute will be answering questions about CTEPH. Yanny Lopez and Missy Storm, both CTEPH patients, will share their testimonies.
PH will be addressed in an Ask the Expert session on Nov. 20 (in English) with Sonja Bartolome, MD, a PH specialist at UT Southwestern Medical Center. A session in Spanish will take place two days earlier, on Nov. 18, with Josanna Rodriguez-Lopez, MD, a PH specialist at Massachusetts General Hospital, and Margie Rodriguez, a specialist nurse on lung diseases.
The link between methamphetamines and PH will be discussed on Nov. 23 in a live session with Ramona Doyle, MD, CEO of the Maven Project. A session in Spanish will be conducted on Nov. 24 by two PH specialists, Vinicio de Jesus Perez, MD, from Stanford University Medical Center, and Karla Cruz, MD, from Prisma Health/University of South Carolina.
A toolkit is provided by the PHA with several resources available, including an awareness banner and a frame that can be added to profile pictures on social media. Information on how to conduct virtual fundraising opportunities also is available.
The PHA is considered the oldest and largest nonprofit patient organization dedicated to the PH community in the U.S. As in previous years, Pulmonary Hypertension Awareness Month campaigns are also supported by Actelion Pharmaceuticals.
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