Gino U.

When I was 16, I was with my mom and her friend on an out of town
trip. I suddenly became so dizzy that I couldn’t even stand up. I had no idea
what the problem is and, sadly, neither did any doctor I visited for the next
30 years. Finally, a local neurologist diagnosed me with Episodic Ataxia. Reading the symptoms, it was so obvious to me. Now I also show signs of EA1. It’s been a frustrating disease to live with because people just laugh when I weave across a room because I can’t walk straight.

When Were You Diagnosed? Which Type (If Known)?

Officially Diagnosed in 2019 with Episodic Ataxia. Also showing signs of EA1 at this point.

How Has Ataxia Impacted Your Life?

I’ve had to get used to it and people sometimes still laugh when I have to hold a railing when going up stairs or weave when walking through a room. But, as a whole, I’ve been lucky enough to be able to live a somewhat normal life.

What is One Thing You’d Like the People to Know About Ataxia?

I’m not sure … I feel like many with different kinds of ataxia are much more in need of support than I am at this point.

Share Your Advice – How Can Others Support Someone with Ataxia?

Just be there for others … same way we can support each other in life in general.

How has NAF Helped You or Your Family?

I’m new to the NAF, but still helpful to know there is a place for people like me with this condition.

Disclaimer: The views and opinions expressed in this story are those of the individual member and do not necessarily reflect the views of the National Ataxia Foundation (NAF). Any medical information shared in this story is based on personal experience and has not been reviewed or endorsed by NAF or a medical professional. Always consult with your own physician or qualified healthcare provider before making any changes to your care or treatment plan.

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