The Pulmonary Hypertension Association (PHA) recognized Wednesday, Nov. 14, as CTEPH Awareness Day and responses show an eagerness to learn about chronic thromboembolic pulmonary hypertension (CTEPH). Social media graphics and messages were shared widely, creating an aura of enthusiasm around the day. PHA fed the excitement by providing a myriad of ways to engage and learn about this rare form of pulmonary hypertension (PH).

Gustavo A. Heresi, M.D., M.S., director of the pulmonary vascular and CTEPH program for the Respiratory Institute at Cleveland Clinic, hosted PHA’s CTEPH Awareness Day Facebook Live Event from his Cleveland office Wednesday evening. Dr. Heresi shared his expertise on diagnosis and treatment of CTEPH with more than 600 live viewers. Viewers asked Dr. Heresi about new CTEPH research, treatments, medications, lifestyle and much more. The video garnered more than 1,300 views in one day; a recording also is available on PHA’s website.

PHA caught up with our celebrity champion, boxer Elvis Medrano, for an interview on PHA’s The Right Heart blog. Elvis sat down with PHA staff to discuss his recent experience at PHA’s International PH Conference and Scientific Sessions, his origins as a boxer, how CTEPH impacts his life in and out the ring, and his recovery from a recent hospital stay. The story created a big buzz on PHA’s social media, leading to more than 150 likes on Instagram and reaching more than 4,000 people on Facebook. Many were left inspired by Elvis’ fearlessness, strength and perseverance.

Angela Michelle also shared her story on PHA’s The Right Heart blog. Angela detailed the twists and turns she has experienced over the course of her journey with CTEPH. Her message is that lives can be saved through early detection. People who read Angela’s story were empowered; her post led to more than 90 likes on Instagram and reached nearly 3,000 people on Facebook.

In addition to the online and social media push, PHA distributed a press release nationwide to newspaper, radio, TV and online media outlets to draw attention to PH and CTEPH. Through PHA and member efforts, the Pulmonary Hypertension Awareness Month campaign is making an impact. Following are statistics from this week alone:

  • Facebook:
    • Number of people who saw PHA posts: 134,633
    • Video views: 10,010
  • Twitter:
    • Number of times PHA posts appeared on an individual’s Twitter feed: 21,900
    • PHA profile page visits: 894
  • Instagram:
    • Number of times PHA posts appeared on an individual’s Instagram feed: 7,189
    • Number of people who saw PHA posts: 1,000

Pulmonary Hypertension Awareness Month is just at the half-way point and the push continues to educate the public, medical professionals and lawmakers about PH. If you have not already done so, visit PHA’s awareness page and use the tools available  to promote awareness. Take note that a customizable press release is in the toolkit for you to insert your story and share with local media outlets to increase awareness in your community.

PHA thanks Bayer for its generous support of CTEPH Awareness Day and Actelion for its sponsorship of PH Awareness Month.