Becoming Involved in the FA Community Was the Best Decision I’ve Made

Becoming Involved in the FA Community Was the Best Decision I’ve Made

Over the past few years, I have learned that Friedreich’s ataxia (FA) patients come to terms with their diagnoses in their own time. At first, I didn’t understand why some patients kept a distance from the FA community and the Friedreich’s Ataxia Research Alliance (FARA). I couldn’t understand other perspectives because of my immaturity, inexperience, and lack of knowledge about the illness. But meeting other patients and having in-depth conversations with them has changed my viewpoint.

I was fortunate that I accepted my diagnosis early on, but everyone’s experience is different. I soon learned to shut up and listen. Initially, my conversations were limited to Facebook Messenger and various ataxia support groups. Then I pushed myself to attend rideAtaxia events and symposia. It was the best decision I’ve made, and I am so fortunate to be part of such a special group of people.

I attended my first FA symposium at UCLA eight months after my diagnosis. It was my first time meeting other FA patients, their families, and athlete and FA spokesman Kyle Bryant. I felt so scared that morning that I considered staying home. I wasn’t sure if I was ready to get a glimpse of my future or to hear doctors and researchers talk about potential treatments for a disease that has no cure.

My family and I loaded into the car and headed up the 405 freeway. As soon as we arrived, I knew I was exactly where I needed to be. Everyone was so friendly. At the time, I wasn’t using an assistive device, but they knew from how I walked and my grasp on my mom’s arm that I was one of them. At that symposium, I was reassured by the amount of medical research being carried out into FA. And I wanted to be involved.

Connect with other people and share tips on how to manage FA in our forums!

I signed up to be a FARA ambassador a few months later. I felt welcome and supported right away. I was comforted knowing that I didn’t have to explain why I moved funny or why I was so fatigued after sleeping 11 hours.

The role solidified my new passion for raising awareness and getting to know the other FAers so I could pick their brains. I realized that the best way to learn was to ask questions. Google could only teach me so much.

It’s been three years since my diagnosis, and more than two since I became a FARA ambassador. I thank God every day for guiding me down this path and letting me see that I’m not alone in this fight against Friedreich’s ataxia.

I hope you take your time to come to terms with FA just like I hope you can push yourself to attend an event. I promise it will be the best decision you make on this FA journey. We can’t wait to meet you.

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Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. 

Native of Los Angeles, California figuring out life with an incurable, life-shortening, progressive, neuromuscular disease Friedreichs Ataxia. Disabled, Arizona State Grad looking to change the world while adapting to a whole new world and sharing my journey in words along the way.
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Native of Los Angeles, California figuring out life with an incurable, life-shortening, progressive, neuromuscular disease Friedreichs Ataxia. Disabled, Arizona State Grad looking to change the world while adapting to a whole new world and sharing my journey in words along the way.

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