Attack Ataxia: Shundra's Journey

I have three family members that have passed from complications of this hereditary condition. My two oldest sisters and a nephew. Spinocerebellar ataxia is a condition that runs heavily in the Wooten family. My symptoms started showing at the age of 43, but I didn't get diagnosed until I was 46.

All in the family

Now, another sister and I are currently affected. I don't even know if other members of my family have gotten tested. I've sent them the information and hope they will utilize it.

Growing up, I never knew this was a genetic condition. I was in the marching band in high school and ran around and played like any normal child. My family never discussed this but I was able to relay that my symptoms were exactly like my sister's for him to order a genetic blood test which came back positive for SCA3 in 2/2016. This diagnosis caused me to go into retirement from teaching Prek and Kdg. at the age of 46.

Leaving a legacy

At the age of 53 now, I want to focus on educating my community and making resources available to families and/or individuals affected by rare diseases either through donations of food or counseling services. When people see me ambulating with a walker they don't understand why and it's especially hard for the people from my past. My friends and coworkers are just to name a couple.

Living with a noncurable rare disease that's noticeable has its ups and downs. I still maintain my independence but have to modify when certain tasks are being performed. The biggest modification is to take things slowly. I am a high fall risk so I have to go slower to prevent falls. My favorite go-to scripture is Jeremiah 29:11