My Journey to a Friedreich’s Ataxia Diagnosis, Part 3 – Friedreich’s Ataxia News

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 medical school textbooks and observed one patient during his residency, but he had never treated a patient with the disorder. He printed off a six-page document about FA, handed it to me, and said, “I’m sorry, but this is about all I know about FA.” He said he didn’t really know how to treat me going forward.

We were silent. No one knew what to say. I looked at the document without really seeing it. This has to be a nightmare, a cruel joke, or a scene out of someone else’s life. Time froze, and so did I. Everyone just stared at me.

Then my husband, Kyle, came over and put his arm around my shoulders. “It’s OK, baby. We can fight this.”

I snapped back, “No, we can’t. This isn’t cancer; there’s no treatment or cure. It’s just going to take away all of my abilities until it kills me. I can’t fight that.” I still feel horrible about snapping at him like that.

As we left that appointment, the receptionist looked at me with the saddest eyes. I felt like I had “Genetic Defect – Terminal” tattooed on my forehead.

On the way home, I texted my closest friends and family. I simply said, “Leaving the neurologist. Just got diagnosed. I have Friedreich’s ataxia.”

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