“Living with pulmonary arterial hypertension (PAH) and scleroderma has changed my life in so many ways,” says Haslina W., who was diagnosed with both conditions in 2008. “Things that once seemed so simple, like walking, doing daily activities, or even breathing comfortably, are now things I have learned not to take for granted.”
November is Pulmonary Hypertension (PH) Awareness Month. PH is a form of pulmonary hypertension that develops when the arteries in the lungs become narrowed, thickened, and rigid, so the heart must work harder to push blood through them. For people living with scleroderma, PAH (which is a type of PH) is one of the most common and serious complications, and regular screening can help care teams catch the condition earlier and improve health outcomes.
“With PAH, there are days when I may look perfectly fine, smile, talk, and laugh like everyone else,” she says. “But people may not see how tired I feel or how much effort it takes to get through the day.”
Over time, Haslina has learned to take life one day at a time. “I have learned to listen to my body, rest when I need to, and stop feeling guilty about not being able to do everything I used to do,” she says.
Still, she wishes more people understood what PAH can take out of a day. “When we say we’re tired, we really mean it,” Haslina explains. “When we need to sit down, slow down, or cancel plans, it’s not because we don’t want to be there.”
For others living with PAH, Haslina shares a message of encouragement. “Please don’t compare your journey with anyone else’s,” she says. “Celebrate your small victories. Be gentle with yourself and ask for help when you need it.”
Even on difficult days, Haslina keeps her focus on hope. “Some days, my greatest victory is simply getting through the day, and that is enough,” she says. “PAH may be part of my story, but it will never take away my courage to live it.”
This month, the Scleroderma Research Foundation is joining the Pulmonary Hypertension Association and others across the disease community to raise awareness and highlight the need for early screening and diagnosis.