Anamaria

A 29-Year Journey to the Truth

My name is Anamaria Mitre, I am from Zalau, Romania, and I am 42 years old. If you saw me today, you would find me enjoying the quiet joys of life. I love reading, watching movies and TV series, solving crosswords, and playing Rummy. Although I don’t drive, I find relaxation in riding as a passenger in a car or simply sitting on my swing in the fresh air.

My journey with Ataxia began around the age of 14, when I started losing my balance. I remember walking down the street, and stepping off a curb became a challenge. I had to stop, regain my balance, and only then could I move forward. Soon, a lack of coordination followed. Buttoning my shirt became a struggle, and my handwriting became increasingly difficult. I saw my first doctor at the age of 16.

After visits to ENT specialists, neurologists, and many tests, I received my first diagnosis: Friedreich’s Ataxia. I lived with this label for 7 years until a genetic test proved it wrong. Following an EMG that showed neuropathy, my diagnosis was changed to Spinocerebellar Ataxia. I lived with this diagnosis for the next 17 years.

The real turning point came at the 2025 Annual Ataxia Conference (AAC). I attended through a “virtual scholarship,” and during a presentation on genetic testing, something clicked. I realized I needed to find the real answer. I started looking for labs, and with the help of a geneticist, I found the right test.

In September 2025, exactly 29 years after my first symptoms appeared, I finally found my correct diagnosis: Ataxia with Ocularmotor Apraxia Type 2 (AOA2), also known as SCAN2 (Spinocerebellar Ataxia with Axonal Neuropathy Type 2). I am deeply grateful to the “Ataxia Family” and the National Ataxia Foundation. Without your support and resources, I would not have succeeded. Thank you!

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

Diagnosed in September 2025 with Ataxia with Oculomotor Apraxia Type 2 (AOA2), also known as SCAN2. (Symptoms started at age 14).

How Has Ataxia Impacted Your Life?

Ataxia changed my life starting at age 14. Physically, it took away my balance and coordination, making simple things like stepping off a curb or buttoning a shirt a daily challenge. My handwriting became illegible, and I cannot drive a car. However, Ataxia also taught me resilience. Since I cannot do active sports, I learned to find joy in quieter activities like reading, solving crosswords, and spending time in fresh air. It limited my body, but not my ability to enjoy life.

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

I want the public to know that simple tasks, like stepping off a curb or buttoning a shirt, require immense concentration and effort for us. We are not just ‘clumsy’; we are working ten times harder than a healthy person just to function. Please be patient and kind when you see us struggling.

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

Just treat us normally. We are the same people inside, even if our bodies don’t cooperate. Patience, a good joke, and a helping hand are the best gifts you can give someone with Ataxia.

How has NAF Helped You or Your Family?

NAF played a crucial role in my journey. Thanks to a ‘virtual scholarship,’ I was able to attend the 2025 Annual Ataxia Conference. A presentation on genetic testing gave me the knowledge and motivation to seek answers again. Because of NAF’s resources and the information I received there, I finally found my correct diagnosis after 29 years of searching.

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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