Ali, a supporter from Turkey, writes about his diagnosis journey and experience with Ataxia UK.
Hi everyone! I’m Ali Demirsoy, 24, I live in Gaziantep, Turkey. Generally, I’m at home – working on research projects or revising for my exams. Currently, I don’t attend school but I do have exams coming up. My social life isn’t that great at the moment because of Covid-19.
I first noticed my symptoms in Primary school. My walking quirks were noticed by those around me, my family and relatives. I had a muscle and nerve biopsy performed at the Cerrahpaşa hospital in Istanbul in 2009. At the Ankara Hacettepe Hospital, I was diagnosed with Friedreich’s ataxia after undergoing genetic testing.
I discovered Ataxia UK on Instagram and have been following them ever since then. As part of International Rare Disease Day, I agreed to participate in the video project and sent Ataxia UK a video about my story. I am determined to support this community because we can only raise awareness if we do something.
It is so wonderful to be a part of the Ataxia UK community. Through Ataxia UK, I have met many lovely and talented people. It is such an amazing feeling to belong to a community no matter how far away I live.
Remember that despite the difficulties of living with ataxia, life is still worth living, so always remain strong and keep going! As long as we are breathing, there is still hope, we cannot allow ourselves to be pessimistic, we cannot isolate ourselves from the community.
Let’s enjoy the moment and fight until the end!