This podcast series, created and produced by phaware, is a regular guest feature on Pulmonary Hypertension News. It brings the voices and life experiences of PH patients, family members, caregivers, healthcare specialists, and others to our readers. You can listen to the podcast, or read the transcript here.
I’m Aware That I’m Rare: Danijela Pešić
The phaware™ interview
Danijela Pešić is the founder of PH Serbia. She was diagnosed with pulmonary hypertension as a baby over 38 years ago. Danijela is dedicated to raising PH awareness across Serbia and Europe, on behalf of people living with the disease. She works to insure the availability of approved treatments in her homeland and encourages research on new therapies.
My name is Danijela Pešić, and I come from Serbia. We started [our association] last year, in 2015. We now have our association less than one year old. It’s a newer association, but we are brave and we want to do many things for patients in Serbia and in the region, and every patient in the world.
I am a patient. I have had PH for 38 years, almost all my life. When I was a little baby they told to my parents that I have PH, and that it is difficult, and I would not survive, but I am long-term survivor. So, I am glad.
My motto is simple. We don’t have any drugs [for PH] in Serbia, just one in the last two years, and before that, nothing. Many people have PH. Many people die with PH. Nobody is helping us to change something, so we must do that alone. That is the reason for our association. We met the incredible Gerry Fisher. He is a man who has a lot of ideas. We started to learn from him, and went to PHA Europe, and we are a part of PHA Europe now.
It’s hard to see what’s happening with patients. There are many rare diseases. PH is difficult to diagnose.
We have a few goals. Our first goal is to raise awareness about PH. Last but not least it’s to get drugs, to get treatments. We don’t have treatments. We don’t have anything to live a normal life. It’s quite different when you live with drugs, and when you live with treatments for PH, and when you live your life without any treatments. That is not a good life.
We have 150 patients. We think that we have many, many more. We organized five events during the 5th of May, World PH Day. Many sportsmen were happy to be with us. That was great. Two soccer teams played in a big derby, and 60,000 people watched that, and 1.7 million people watched TV via the internet.
We see the changes. We had the opportunity to meet many, many people from other countries — patients, doctors, pharmaceutical companies. We learned many things. We have new contacts. We are trying to do the best for us. Our government, [for the] first time in my life, they sent us a letter to go there and see what will be, and they want to help us. They see what we [are] doing. Over 3 million people saw that. Government people saw, too. They want to help us.
Many people ask how we approached the sportsmen. It’s a catch. It was very difficult. We had more than 20 meetings with [the] board, with the sportsmen, with many, many people. The key was that we told them that they stay breathless because of wearing the medal. We stay breathless because our award is life. They were touched with that. They want to help us.
I think the next level is better and bigger, trust me. Trust me. We have plans for 2017. We believe that we didn’t do many, many more things. That will come. I hope that patients in Serbia, Bosnia, Macedonia, all Balkans, and all east Europe will get medicines and good treatments, and that they will live a good life. That is our goal.
My name is Danijela Pešić, and I am aware that I am rare!
EVERYBODY HAS A STORY. WHAT’S YOURS?
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And learn more about pulmonary hypertension at www.phaware.global. #phaware #phawarepod
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