The Pulmonary Hypertension Association’s “Live PHearlessly” campaign strives to celebrate how the pulmonary hypertension community thrives despite a rare disease.
WASHINGTON, Oct. 19, 2023 /PRNewswire-PRWeb/ — Every November, the Pulmonary Hypertension Association (PHA) launches a national campaign to raise awareness about pulmonary hypertension (PH). This progressive rare disease is defined by high blood pressure in the lungs and can cause right-heart failure and even death.
For this year’s PH Awareness Month, PHA is launching the “Live PHearlessly” campaign to celebrate the resilience of individuals with PH. Throughout November, PHA will share inspiring stories that demonstrate how people from the PH community thrive while managing this rare disease. PHA will also share educational materials about risk factors, signs and symptoms.
PH contributes to more than 18,000 adult deaths each year in the United States. It can occur among those with left-heart disease; associated conditions such as sleep apnea, chronic obstructive pulmonary disease (COPD) or scleroderma; or from congenital heart disease. It affects people of any age, sex, race, or social or ethnic background.
PH is significantly underdiagnosed and misunderstood, even among health care providers. Symptoms, including shortness of breath, fatigue and chest pain, aren’t specific to PH and can dangerously delay diagnosis. While PH is incurable, early diagnosis and proper treatment can extend and improve quality of life.
“PHA continues to share stories of the triumphs and challenges of individuals with PH. This awareness month we highlight how members of the PH community ‘Live PHearlessly,’ proving that a PH diagnosis doesn’t define them,” said PHA Board of Trustees chair Tony Lahnston. “The pulmonary hypertension community faces a bright future with increased awareness, improved support and advances in available treatments. PHA staff and leadership remain dedicated to fulfilling our mission to extend and improve the lives of those affected by PH.”
PHA’s outreach during November includes social media, advocacy, education and fundraising components. PHA’s PH Awareness Month digital toolkit includes social media profile and cover images, infographics, downloadable fact sheets and flyers, and other elements to raise awareness throughout November.
Notable PH Awareness Month Activities
1.CTEPH Awareness Day. PHA will raise awareness Nov. 8 about chronic thromboembolic pulmonary hypertension (CTEPH), a rare form of PH caused by blood clots in the lungs that harden over time and impede blood flow. Up to 5% of people who develop pulmonary embolisms (blood clots in the lungs) may develop CTEPH. Unlike some forms of PH, CTEPH has treatment options, including a potentially curative surgery.
To celebrate CTEPH Awareness Day, PHA will release videos in English and Spanish highlighting 10 important CTEPH facts. Additionally, PHA will share a video of CTEPH patient Mark Porter discussing his diagnosis and treatment journey. The day’s activities will conclude with a national virtual support group for those affected by CTEPH at 8 p.m. EST.
2. PHA’s Day of Action, Nov. 15, aims to elevate the pressing need for supplemental oxygen access. The PH community will share their supplemental oxygen stories and photos on social media; send letters to the editors of magazines, newspapers and online platforms; and urge Congress to improve access to supplemental oxygen.
3.Joining the global day of giving, PHA will celebrate GivingTuesday on Nov. 28, inviting community support and participation.
4. On Nov. 30 at 2 p.m. EST, PHA will host the first installment of the two-part webinar series, “Hope Through Research in Pulmonary Hypertension: Emerging Developments.” Simulcast in English and Spanish, this webinar will address developments in PH research and PHA’s investment in the clinical trial process. The second webinar, “Hope Through Research in Pulmonary Hypertension: Clinical Trails,” is Dec. 14 at 2 p.m. EDT. Both webinars were developed in partnership with FundaciSn Contra la HipertensiSn Pulmonar, a pulmonary hypertension organization in Spain.
5.In addition to virtual opportunities, PHA will host three in-person fundraising events:
More information about PH, the “Live PHearlessly” campaign and how to raise awareness can be found at PHAssociation.org/Awarenessmonth.
About the Pulmonary Hypertension Association
Headquartered in Washington, D.C., the Pulmonary Hypertension Association (PHA) is the country’s oldest and largest nonprofit patient association dedicated to the pulmonary hypertension (PH) community. Pulmonary hypertension is a rare, chronic and life-threatening disease of the lungs for which no cure currently exists. PHA’s mission is to extend and improve the lives of those affected by PH. To achieve this mission, PHA engages people with PH and their families, caregivers, health care providers, and researchers worldwide who work together to advocate for the PH community, provide support to patients, caregivers and families, offer up-to-date education and information on PH, improve quality patient care, and fund and promote research. For more information, visit www.PHAssociation.org and connect with PHA on X/Twitter, Instagram, Facebook and LinkedIn.
Media Contact
Zangi Miti, Pulmonary Hypertension Association, 1 301-565-3004, [email protected], https://phassociation.org/
SOURCE Pulmonary Hypertension Association
