My Darling Disability - a Column by Kendall Harvey

I have been working with my physical therapist, Kelli, for a year and a half. She is brilliant at what she does and has become a dear friend. I am so thankful to have her by my side as we fight Friedreich’s ataxia (FA) together. She was…

Third and final in a series. In a previous column, I discussed the tests I underwent to diagnose Friedreich’s ataxia. “Kendall, I was afraid that this might be the case: You have Friedreich’s ataxia.” My doctor looked as shellshocked as us. He studied Friedreich’s ataxia (FA) in his…

Second in a series. In a previous column, I discussed my active childhood and early signs that something wasn’t right. As the evidence began to pile up, I started to accept that someone who has been extremely active her entire life doesn’t suddenly become uncoordinated. I decided…

First in a series. From the time we are toddlers, we start dreaming about the future. We want to be firefighters, teachers, rock stars, race car drivers, or in my case, a zoologist. So many exciting possibilities exist, and we want to do them all. As we get…

I recently began participating in a 48-week, Phase 2 clinical trial for Friedreich’s ataxia. The way I understand it, the study’s investigational treatment is designed to make the cells in my body that are damaged by FA work more efficiently, or more normally. I’m hopeful that this can slow…

  The first time I ever heard of Friedreich’s ataxia was the day I was diagnosed with the disease in 2013 at the age of 25. To say I was in shock is an understatement. I was scared, overwhelmed, confused, angry, eager, and desperate. So, I am going to try…

Friedreich’s ataxia causes a wide array of symptoms. Every FA patient experiences the disease differently. For me, fatigue is a major symptom. Before I experienced FA, I thought I understood what “fatigued” meant — being really tired. Boy, was I wrong. Oxford Dictionary’s definition of tired is:…

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…

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…

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…