How do your symptoms affect your quality of life?
"I often feel dizzy and have a tightness in my chest. I’m exhausted and my muscles ache. And above all, I’m short of breath. It’s hard for me to breathe. There are days when I don’t feel so well, and then I can’t go outside anymore. It’s no longer possible to climb a hill or even a flight of stairs. It’s been a frightening but also wonderful journey to rediscover joy and peace with my situation. This required a holistic approach.”
How did you get your fears under control?
“When I was diagnosed, I couldn’t imagine what that would mean for my life or what would happen. One of the hardest things for me was no longer being able to work. But the biggest challenge for me is admitting to myself that I’m sick and can no longer do everything I used to do. It helps a lot to meet with like-minded people to better cope with the illness, as we do in our support group. Taking care of your mental health and seeking help from a psychologist shouldn’t be taboo.”
How do you live with the illness?
“How people perceive the illness varies from patient to patient. Sometimes you can see the despair in patients’ eyes. For me, it’s important that I don’t need help from others for as long as possible. And it’s very important for all of us to stay informed about new, innovative treatment methods.
Another aspect is the fight against isolation. My family is always there when I need help; they understand my situation. For me, the most important message is: Never give up! With PAH, you’re the same person you were before your illness. You’re still “YOU.”
How can someone diagnosed with PAH find quality of life?
“I’ve learned that taking control of our own health gives us the best possible chance to improve our quality of life. After all, we know our own bodies better than anyone else. To achieve this, we need support and reliable tools for managing the disease.
I believe the best way to do this is to join a support group. In my case, that’s PH Austria. I know that without medical treatment and PH Austria, I wouldn’t be able to live the way I do today, and that’s why I’m so motivated to encourage others to join a support group and help them gain access to high-quality medical care.”
