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.
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