For Sam, Dystonia Is More Than A Pain In The Neck

Sam Bradley hit the dystonia jackpot, but that’s not a good thing.

Bradley won the NCAA record for the quickest (wrestling) pin in college, and is a black belt in karate, and he played football. Six years ago, however, his life changed.

His muscles began pulling and twisting, and his shoulder felt like it had been dislocated. Bradley was diagnosed with generalized dystonia, and the muscles throughout his body have the potential to be affected.

Before long, dystonia rendered him unable to work.

Bradley’s dystonia is triggered by bright lights, rain, loud music, sunlight–everything extreme triggers his dystonia and he has an attack every day. It’s especially distressing when he’s driving and he feels an attack coming on. He immediately pulls over, and if he’s with another driver, he’ll ask that person to take the wheel.

Bradley’s neurologist has been treating him with Botox injections once every three months. At those appointments, though, he receives 15 injections. Botox is synthesized from bacteria and is one of the most potent neurotoxins known to man. It’s given in very small doses, but when it’s released into a nerve, it prevents that nerve from producing the neurotransmitter that causes muscle contractions; and, if you can’t release neurotransmitter, you can’t contract the muscle. Yet, every muscle muscle has millions of fibers, and each injection might only affect 200,000 of them. Sometimes the muscles will find a way around the Botox, so it’s like hitting a moving target.

That’s why Bradley has started a foundation called Dystonia Matters to help raise awareness about dystonia because so few people have heard of it.

Over 400,000 people have this condition, and it is thought that multiple sclerosis and Parkinson’s disease are cousins to dystonia.

Find out what Bradley had to say by watching this enlightening video, and help get the word out about dystonia and available treatments!

Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

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