Throughout November, the Pulmonary Hypertension Association shared the stories of people who “Live PHearlessly” to raise awareness of pulmonary hypertension. The pulmonary hypertension community selflessly submitted quotes and anecdotes to mark PH Awareness Month. Their stories — from the U.S. and across the globe — demonstrated resilience and empowerment.More than 30 people with PH shared their experiences, which ranged from advocacy for treatment reform and serving local communities to exploring the outdoors and exercising. They include Wendy McBride of Statesboro, Georgia, who advocates locally and nationally for insurance reform to raise awareness and drive change.Similarly, Ayotunde Omitogun of Lagos, Nigeria, advocates on behalf of people with PH in her country and helps dispel myths and reduce stigma. “I am determined to take charge of my health, voice my needs and actively participate in health care decisions,” Omitogun says. “Self-advocacy empowers me to speak out, set boundaries and prioritize my health.”Esther Liu, 13, chooses to “Live PHearlessly” by playing on two club rugby teams. “My parents say my PHearless determination is expressed with each play as I take the ball forward regardless of who or what is in my way.”Ethan Park shares this go-getter spirit. When he was diagnosed, he spent four weeks in the hospital and was terrified PH would deter him from enjoying his passion. “Fishing has always been a part of my life and with the help of my PH care team, I am able to keep fishing and ‘Live PHearlessly.’”Giving back to the community is how Jamie Mykins lives PHearlessly. Since her diagnosis in 2014, Jamie has completed a master’s degree in mental health counseling at Northwestern University and helps others through the Veteran’s and Military Crisis Line. She also fosters kittens and has helped 10 kittens find new homes.Karen Taylor shares Jaime’s affinity for service by engaging in church, community activities and service events through her sorority, Alpha Kappa Alpha.“My encouragement to anyone living with PH is to believe in yourself and your own strength, keep a detailed routine of taking your medications and checking your vitals, and know when to rest,” Taylor says. “Life is so precious. Enjoy every moment of it with the ones you love with gratitude and passion.”Coupled with those stories, the Pulmonary Hypertension Association also shared resources about PH, including links to brochures about associated conditions, printable fact sheets, an infographic and a customizable press release.CTEPH Day
PHA celebrated CTEPH Awareness Day on Nov. 8 by releasing three new videos about chronic thromboembolic pulmonary hypertension. In separate English and Spanish videos, William Auger, MD, and Gustavo Heresi, MD, MS, covered 10 important CTEPH facts. In the third video, Mark Porter shared his CTEPH journey, including his decision to undergo pulmonary thromboendarterectomy surgery.  A call for oxygen reform
On PH Awareness Month Day of Action on Nov. 15, the PH community advocated for oxygen reform by emailing their members of Congress, writing letters to the editors of publications they read, and sharing their stories about accessing supplemental oxygen. Among the stories we promoted were those of Amy Burant of Denver, Colorado, and Nancy Zeppa of Burlington, New Jersey. Burant shared her “Case for Portable Liquid Oxygen” and Zeppa pointed out how “Oxygen Users ‘Desperately Need More Options.’ ” We continue to ask the PH community to raise awareness of this important form of PH treatment and advocate for improved access. You can still share your story through PHA’s Supplemental Oxygen Reform page. Take the next step to support supplemental oxygen reform bin advocacy and use PHA’s pre-written template to easily send messages to your legislators. GivingTuesday
Festivities ended with GivingTuesday on Nov. 28. PHA raised over $80,000, thanks to contributions from individual fundraisers and the Kitchen Table Society, PHA’s strongest group of supporters. The Kitchen Table Society matched donations up to $35,500. All funds will help our efforts to extend and improve the lives of those affected by PH. If you missed the chance to share how you “Live PHearlessly,” consider sharing your story of empowerment in our Right Heart Blog. Help raise PH awareness and provide hope for others.