People with pulmonary hypertension (PH) throughout the world marked World PH Day May 5 by sharing their experiences with modern and old-school technology. This year’s events largely were virtual because of the COVID-19 pandemic, so most people used the #WorldPHDay2020 hashtag on social media. But some members of the global PH community took to the airwaves via ham radio.
Participants shared symptoms, questions and information about the frequently misdiagnosed disease on social media. They also shared photos that celebrated people living with PH. The #WorldPHDay2020 hashtag reached nearly 52,000 people through social media interactions.
The Pulmonary Hypertension Association (PHA) was among the organizations that helped raise PH awareness with the #WorldPHDay2020 hashtag. Its World PH Day posts reached more than 34,500 people. The World PH Day website, which PHA manages, received nearly 2,400 page views on May 5. More than 100 news outlets helped spread the word across the U.S., reaching a potential audience of more than 20 million.
Jack Bartky, an amateur radio enthusiast from New Jersey, created a special event day to raise PH awareness. Over slightly more than 24 hours, Jack and his wife Jessica, who has PH, heard from about 400 amateur radio operators from 20 countries. Their related website has attracted 1,700 visitors from more than 30 countries.
“The on-air response to our event was great, with nearly every operator asking questions about PH and thanking us for what we were doing,” Jack says. Because of the event’s success, he and Jessica created a Facebook page and reserved the call sign W2H for next year for next year’s event. He plans to operate the station even longer next year.
Interested in seeing how others participated throughout the world? Check out these tweets from global health and PH organizations:
PHA Canada wanted to paint Twitter and Canada purple for World PH Day 2020, a color commonly associated with PH.
It’s #WorldPHDay 💜💜 Let’s paint Twitter purple! Share this post to raise awareness about PH with the hashtags #PaintCanadaPurple #WorldPHDay2020! Why raise awareness? Visit https://t.co/8PKSJIPjSX pic.twitter.com/wh1cyOvFyg
— PHA Canada (@PHACanada) May 5, 2020
The European Lung Foundation raised PH awareness by asking for improved diagnosis for earlier treatment and better outcomes for those affected by PH.
Did you know, it can take up to 3 years for people with pulmonary hypertension #PH to get an accurate diagnosis?
Today on #WorldPHDay2020, we are calling for improved diagnosis for earlier treatment and better outcomes for those affected.https://t.co/DTbXApGI9W pic.twitter.com/IbC1Fdm5rD — European Lung Foundation (@EuropeanLung) May 5, 2020
Sociedad Latina de Hipertensión Pulmonar asked its community to help spread PH awareness. This graphic notes that even washing your hair can be difficult for people with PH.
Debemos concientizar al resto con respecto a un paciente que padece de Hipertensión Pulmonar. Ayúdanos a indentificar y concientizar sobre tan rara enfermeda
Mientras respiras sabes que estás vivo, llenas tu mundo de razones para inspirar
.#worldphday2020 __#MiVidaConHP pic.twitter.com/mj6LBtHIAg
— Hipertensión Pulmonar (@LatinosConHP) May 7, 2020
PHA UK recognized that World PH Day 2020 was different than in previous years because of COVID-19. It stressed the importance of still making PH community voices heard.
— PHA UK (@PHA_UK) May 5, 2020
MSD France, a French health organization, encouraged the PH community to wear masks share pictures of themselves with the #FlauntYourMask hashtag.
[#WorldPHDay2020] Porter un masque c’est pour me protéger et surtout pour protéger les personnes atteintes d’hypertension pulmonaire ! 😷 Rejoignez l’initiative de @worldphday en partageant vos photos 🤳#FlauntYourMask pic.twitter.com/2BtLrgDpPM
— MSD France (@MSDFrance) May 5, 2020