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I'm Aware That I'm Rare: the phaware® podcast

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Oksana Kulish Transcript

Apr 18, 2017

Oksana Kulish is the founder of the Pulmonary Hypertension Association in Ukraine. (PHURDA) She discusses Ukraine’s limited access to therapies and why some PH patients in Ukraine are orphans. #WorldPHDay

My name is Oksana Kulish, I am from Ukraine.

My story begins from the very beginning when I was born. PH has always been with me but it was kind of a fight. I was a happy child but I had to fight for each breath. It was my dream to get married, to become a mother, and to have a child so I did manage to do that.

In 2011, I was in a critical state and I needed help. It was really hard to ask for help, but I had to do that because when I looked at my child, I really realized that I had to do that. And at that time, I promised to myself that I will change the life of each PH patient in Ukraine. 

I was stabilized and after that, I founded the PH Association in Ukraine and also, the charity foundation, Sister Dalila. I don't know whether it's good or bad that I am a PH patient. I think it is my mission and I will bring it through all my life. I really want to change the lives of PH patients in Ukraine. I know they are not doomed, but they are just sick.

I have many limitations, I cannot run, I cannot dance, and I cannot play football with my son, but I substitute it by helping other people and I'm very happy that I can do that. And I'm very thankful to God that I can do that. Statistical data says, according to the Ministry of Health that we have 496 patients in Ukraine with PH. Personally, I know about 100 PH patients who are the members of our association. We are trying to create PH family in Ukraine right now so we can communicate with each other.

We organize PH days in Ukraine, the days of rare diseases and other kinds of different meetings for PH patients. And each PH patient realized that he or she, they're not on their own and they come and communicate with us. Nowadays, unfortunately, we have very limited access to therapies and medications for PH patients. We don't have a lot of access to the medicines in Ukraine right now but we are trying to do that. It is quite impossible because people don't earn much money, they get $30 per month in Ukraine when the medicines cost $1,000. 

Our association is trying to adopt new regional programs for PH patients. Nowadays, there are two regional programs adopted. Only 17 patients get drugs for free. But statistically, there are 496 patients so it's nothing. Therefore, there is so much to do and we continue to do the work. It is problematic to get transplantation for PH patients in Ukraine because we don't have any access for that in Ukraine.

Many PH patients are orphans. They are orphans because state cannot take care of them. There's actually one child who is an orphan and she needs a transplantation right now so we are trying to knock every door to find help for her. This child, she's the embodiment of the problem in Ukraine. It shows that people are dying from pulmonary hypertension in our country. This child really loves her country and she's very proud to be Ukrainian but unfortunately, the state cannot provide treatment for this child.

You can find us on Facebook, this is charity foundation, Sister Dalila. Also on Twitter. Also, we have the website of the charity foundation, Sister Dalila. There's also a group on Facebook which is called Phurda, it's P-H-U-R-D-A, this Pulmonary Hypertension Ukraine Rare Disease Association. And I am open to talk to everyone who wants to talk to me and I have my personal page on Facebook, Oksana Kulish.

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