Written by Virág Hazai, an Ehlers-Danlos Syndrome patient advocate living in Hungary.

###

My name is Virág, and I’m a university student with Ehlers-Danlos syndrome (EDS). I would love to share my story with the world, because I want to inspire others and give hope to other patients. I know many people are struggling with getting diagnosed and, with the reading of my story, I hope they could feel that they are not alone.

Even though EDS is an illness which is present from birth, it took many years for me to get a final diagnosis. My serious symptoms appeared when I was around 17 years old. Before then, I was going from doctor to doctor, uncountable appointments and examinations, and I had to face a lot of rude and ignorant doctors. Just because they couldn’t find the cause of my symptoms, they blamed me and said that I was “overreacting”.

It took around eight years to finally get diagnosed with EDS. I would love to spread awareness about this illness, which is rare and barely known by many doctors. In my country, Hungary, I met many more doctors who had no idea what EDS was than doctors who had at least heard of it.

My whole life, I was prepared to be a professional pianist. You could see me practicing at the piano ever since I was a very small child. Because of my illness, I couldn’t become one. But I have never stopped being a musician, even though my health has worsened.

I have some online accounts on YouTube, TikTok, and Instagram where I upload my piano videos and give hope to people to never give up on their dreams no matter what happens.

I also wrote a book about my story, my experiences with people, with doctors, with illness, and of course with music. This is a photo of the cover:

Here is a link to my book in Hungarian. It will be translated to English soon, if everything goes well. Thank you for listening to my story!

###

If you would like to share your rare or chronic disease story with Patient Worthy, you can get in touch with us here.