Jacqueline Ambur

“So what we think you have is something called autoimmune cerebellar ataxia.” Cool. Cool. Cool- No idea what that is. Countless blood tests, a few MRIs and a couple hospital visits later looking for answer to all the issues I suddenly had but the answer I got was something I knew nothing about. Even the team of doctors that had been working on my case for the past few months looked at each other with very confused expressions like they weren’t even sure that they were correct. I was barely 19 at the time and didn’t really know much about how the medical process worked so I just nodded and said “ok” thinking this must just be a working theory, that I would get a ‘real’ diagnosis later on.

A few more years of deep bruises, sprained ankles and a few more trips to the ER passed by and still I hoped to get ‘formal’ diagnosis for my illness. Yet every time I went in for a checkup doctors kept using that strange term ataxia, so I figured maybe I should probably look into this ataxia thing some more. I’m not sure what I was hoping to find; of course I wanted a cure -I would love just to have one day where I could walk and talk like I used to again- but if I hadn’t found a cure by now it seemed highly unlikely that Google would have one. I was just tired of being the only person I knew who had this illness. I stumbled upon the NAF page and the Annual Ataxia Conference to which I immediately bought my ticket for. I didn’t know what to expect but I was excited.

At the conference I met some of the other under 30s who were also figuring out how to deal with ataxia at a young age. Nearly a decade after my diagnosis and this was my first time meeting another ataxian! We had a great time together over those three days and promised to keep in touch with each other throughout the year. Not only did we keep our promise but we have more than tripled the size of our little group in just a few years. Ataxia brings times of hardship and sadness that come and go throughout your life but I’m so glad that I have good friends to help me through it. I can honestly say they have saved my life and for that I am forever grateful.