The Late Diagnosis
In the emergency room, they performed an echocardiogram and that's when they first saw something was wrong. Additional tests followed, and eventually I was diagnosed with pulmonary arterial hypertension.
This disease is characterized by high pressure in the blood vessels of the lungs, which strains the heart and makes breathing difficult. At 21, while I was still studying and just beginning my life—it was a shock.
The challenge with PAH is that its symptoms—fatigue, shortness of breath, dizziness—are also symptoms of dozens of other diseases. So many patients get misdiagnosed at first, sometimes for years.
"What helped me the most was realizing I wasn't alone."
Living with PAH
After diagnosis, I started medication aimed at widening the blood vessels in my lungs and reducing strain on my heart. This medication doesn't cure the disease—but it allows me to live.
Over the years, I've learned to listen to my body. To know when to rest, when to push forward, and where to find balance. It's not always easy. Some days my body won't cooperate, and some days feel like a small victory.
One of the things that helped me most was understanding that I'm not alone. PAH is a relatively rare disease, and patients often feel isolated because people don't know it, don't understand it, and don't know what we're going through.
Community as Support
Joining the PAH patient community transformed me. I met people who know exactly what it means to explain to friends why you can't climb stairs, who understand the fear before every medical appointment, and who can share even the smallest moments of joy.
The community gave me tools—information, support, and someone to talk to at 3 in the morning when anxiety is stronger than sleep.
What I've Learned
Ten years with this disease have taught me that life can be full even within limitations. That you can learn, work, love, laugh—even when your body doesn't give you the choices you'd wish for.
The diagnosis changed my direction—but it didn't determine my destination.
"The diagnosis is a frame—but you choose what to fill it with."
— Shira Amuna Amsalem