Canberk Çolak is from Turkey and has been diagnosed with AOA2. Canberk was always very active as a kid and later on, he used to love playing the clarinet. His diagnosis changed his perspective on life, and he now more actively pursues the things he really wants to do.
Hi there, I’m Canberk. I was born and raised in Turkey. We are with three siblings and I’m the youngest of the family. I have one brother and one sister who is a doctor and plays a very big role in my diagnosis of ataxia. I’m the only one with ataxia as an exception to everyone I am related to.
I think I can say that my childhood was very normal. I was a very healthy kid and ran everywhere. Even if sometimes my parents told me I might be hyperactive. Neither I nor my parents thought that I might have a chronic disease. But when I was a teenager I started to show symptoms. I was not sure what was happening to me but my writing skills were getting worse in the first place. I had a hard time when writing because I couldn’t hold the pen correctly. When the symptoms started, everyone thought it was just a kind of psychological effect related to stress, no one thought it was a physical condition.
Then my balance got weaker and weaker day by day. I couldn’t stand up on one leg anymore. Due to my weak balance, my gait has changed in a negative way, and also I fell down a few times. Therefore, they decided we needed an expert opinion on this. So I set up an appointment with a neurologist in Hatay where I live in Turkey. They did an examination and I also took an MRI. At the end of it all, they said I might have a genetic disorder but they hadn’t figured out what I have exactly. So we needed to see another doctor who specialized in genetic disorders. Long story short, they diagnosed me with ataxia. But it was a just general diagnosis with the type still unknown. It was the very first time I heard about ataxia. I didn’t know what would bring me or what to expect in the future. Actually, I didn’t care a lot. I was always thinking “never mind and keep living, how much worse can it get?” I was more like the relaxed guy in the family, compared to how I am now. But one thing is different: I did not know how much worse it be.
In the summer of 2016, I, my sister, and my brother-in-law went to Germany to see a neurologist specializing in ataxia. At the clinic, they examined me again and performed some tests I never heard of before. When all was done my neurologist told me I have AOA2, which means ataxia oculomotor apraxia type 2. The doctor also told me that this is one of the rarest type of ataxia. That was a breaking point to me.
Then I realized I might be in a wheelchair or I might fall down and die suddenly, so there may not be a lot of time left for doing things. I need to live my life faster than way I want. I was studying for university exams at that time. So I went to Ankara, capital of Turkey, for university and started to live on my own. My biggest passion at that time was playing clarinet. Of course I was going to physical therapy three times a week as well. I never missed my treatment but I also never ignored want I wanted to do. During my second year at university, I decided to move to another city. I changed my school too and moved to Gaziantep which is located Southeast of Turkey. One day I watched a few paragliding videos on Youtube and love the action. I thought that time “why not”:) I reached out a organization and booked a flight. I have always been a quick-witted person since the diagnosis.
In Turkey, there is almost nothing for disabled people and there is nothing for ataxians. So I start reaching out online to find people like me. I found some Facebook groups on ataxia that I joined. I keep searching and hoping for new treatments and clinical trials. I recommend to everyone: never lose hope.
I’m a dietitian now. I graduated in 2019. Studying with ataxia was kind of a compelling experience. I took exams on a computer during the last few years of school because of my writing skills. I knew that everyone stared at me but I had to do this, I couldn’t be normal. My classmates were trying to help me as much as they could. Since I graduated, I work from home because I get a little ashamed when walking outdoors. I know that it’s not my fault that I have ataxia but I can’t stop feeling ashamed. Sometimes I feel so depressed due to having it. But I have to stay strong and fight every single day. Because I have the ataxia, but ataxia doesn’t have me.
Thank you Canberk Çolak for sharing your story!
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