I am DeVona Hickerson
a family member in a familial ALS family,
an ALS gene carrier,
living with ALS
Kentucky
This disease is a beast, and I will be a voice for critical therapies and a cure until I can be heard no more.
My name is DeVona Hickerson. I was diagnosed with ALS on March 5, 2021. I was a very active person. In fact, in the fall of 2020, I was riding a bike on Hilton Head Island. I kayaked with my family at Red River Gorge, and I shot an eight-point buck in November 2020. I was teaching when I became symptomatic in February 2021.
I’ve been a schoolteacher for 26 1/2 years. I’m married and have two children. I am fighting to live and be with them as long as I can.
I lost my dad to ALS when I was 12 and I lost a sister and brother in 2014 to ALS. I had a fast onset of muscle twitches and leg weakness in February 2021. Soon after I had atrophy in my right hand between my finger and thumb. I went to my primary doctor and he ordered a battery of blood tests and did a lumbar MRI, which were all fine.
Due to my family history of ALS, he referred me to a neurologist for an evaluation. I saw the neurologist on March 4 and had an EMG on March 5, and was diagnosed on March 5. I quickly started Rilozule and Radicava by March 18, 2021.
This disease is a beast, and I will be a voice for critical therapies and a cure until I can be heard no more.
