Half a Million People Are Affected, So Why is This a Secret?

Eight years ago, Gina Rosendall-Saucedo received a diagnosis for her persistent movement disorder that she never expected.

After an 18-month search for answers, she finally had one, but it was devastating news: her symptoms were from dystonia.

Dystonia is a rare and incurable condition where a person’s muscles tighten and contort the body into abnormal, and oftentimes, painful postures. And like many others with dystonia, she had a hard time being correctly diagnosed. Oftentimes, people are misdiagnosed with epilepsy and other conditions before dystonia is even mentioned.

Wilx.com describes Gina’s reaction, breaking down and crying. As a wife and mother, dystonia has impacted her ability to participate in normal activities with her family, and has made working impossible, but one of her biggest regrets is that she can no longer play ball with her son.

One thing Gina is able to do is help raise awareness for dystonia. There is a push for September to be declared Dystonia Awareness Month, a step that the state of Michigan has already taken.

If you would like to learn more about dystonia, click here. Or, contact the Dystonia Society.

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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