As we celebrate Pulmonary Hypertension Awareness Month, we’re sharing the stories of people who commit to “Live PHearlessly” with pulmonary hypertension. Today, we focus on four stories from the global PH community.
Ayotunde Omitogun of Lagos, Nigeria, lives PHearlessly by advocating for herself and others with PH. “PH is relatively unknown and misunderstood in Nigeria, which is why I am determined to take charge of my health, voice my needs and actively participate in health care decisions,” she says.
Omitogun is the founder of Cardiac Community, a Nigerian association committed to raising awareness and advocating for various heart diseases.
“I actively educate myself and others about PH to dispel myths and reduce stigmas,” she says. “Self-advocacy empowers me to speak out, set clear boundaries and prioritize my health without hesitation. Self-advocacy is about having the courage to say ‘no’ when needed and making my well-being a top priority.”
Rocking out
Farther north, David Stott of Merseyside England, used his diagnosis to turn his passion for music into a career. He performs in a theatric rock band, similar to Alice Cooper, called Ward XVI.
“I’ve played guitar since I was 11 years old,” says Stott, who was diagnosed 10 years ago. “I realized when I was diagnosed that I had no legacy to leave and the fact I loved music was never shared.”
At the time, Stott was a hospital manager whose life was consumed by work. “When I got the news, I needed a way to vent and express what I feared,” he says
Since becoming Ward XVI’s guitarist, Stott has toured the UK three times and released two albums. He also met his wife, Kerrie, the lead singer of the band.
“If I hadn’t walked beyond those few first shaky steps with PH, I would have never achieved what I have and would not have 5% of the memories and experiences that I will ultimately look back on.”
A song in her heart
Bekah Calverly of Sydney, Australia, lives PHearlessly by not letting her PH define who she is. She lives with a “glass half full” attitude.
“I enjoy creating gluten-free baked goods and engaging with other PHers through walks and social media,” Calverly says. “I love to travel, I sing in a Sydney Opera House choir, I spend as much time at the beach as I can, and I have an amazing group of friends all over the world,” Calverly says.
Self-advocacy
Diagnosed in 2011, Salvador Calderón Barbero of Madrid, Spain, lives PHearlessly by being an educated, informed patient. Salvador felt stable with his health, until he had to switch to a generic version of his PH drug. After investigating the ingredients in the generic drug, he learned that he wasn’t getting the right treatment and began to fight to get the appropriate medication.
“We can’t take stability for granted,” Calderón Barbero says. “I encourage all patients to stay active and informed about their disease to receive the best possible care.”
View more stories from those living PHearlessy, and join us throughout November by raising awareness, sharing your stories and empowering the PH community. Share how you Live PHearlessly, and download resources and social media graphics from our toolkit.
