Since my 2013 Friedreich’s ataxia diagnosis, the condition has consumed a part of every day. I was prepared for the physical changes that would come with FA, but the mental and emotional stress has surprised me. It is a factor in almost all of my…
My Darling Disability - a Column by Kendall Harvey
In Friedreich’s ataxia (FA) care, we don’t really have treatment options. There are clinical trials taking place to work on treatments and hopefully one day, a cure. But until then, we are left at the mercy of this progressive, degenerative disease. Wow. That is heavy. And disheartening. The…
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My Big (Literal) Break
Editor’s note: This post includes images of a bone break that may be disturbing to readers. For some time now, I’ve needed to use a walker (or another mobility aid). My physical therapist, Kelli, has been encouraging me to use my rollator around the house. It is…
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Fight or Flight in FA Patients
Almost everyone can point to moments in their lives dictated by the choice: fight or flight. By definition, the fight-or-flight response is a physiological reaction that occurs in response to a perceived harmful event, attack, or threat to survival. Friedreich’s ataxia (FA) patients have to choose to fight every single day.
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What rideATAXIA Means to Me
Friedreich’s ataxia (FA) is a big, overwhelming disease. And with it being so rare, it can feel very isolating. My immediate family and I had never even heard of FA until my diagnosis in 2013. When we started telling family and friends about this disease, my aunt remembered seeing a…
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Dealing with Progression
As my Friedreich’s ataxia symptoms progress, so do my feelings and emotions about this complex disease. When diagnosed, I accepted it pretty quickly. I obviously knew that something was wrong with me, so defining it helped validate what was happening to my body. Don’t get me wrong, in my younger…
When I met my husband Kyle in high school at the age of 16, everything was perfect. We were perfect. We were madly in love with limitless possibilities ahead of us. The world was our oyster and we couldn’t wait to “grow up” and start living. We got engaged in…
When diagnosed with Friedreich’s ataxia (FA) at the age of 25, I was devastated. I thought I would have really poor quality of life and that all of the plans I had for my future would be impossible. One of the biggest emotional topics was parenthood. I thought that having…
My name is Kendall and I was diagnosed with Friedreich’s ataxia (FA) at the age of 25. I grew up in Katy, Texas, where my childhood was quite happy. I was always very active, participating in cheerleading, the swim team, volleyball, softball, track, and any other sport I could find to join.