The Crooked World of Life with Dystonia

In a segment on Oprah, dystonia patient Rogers Hartmann agreed to wear a camera on her head to show how she experiences the world.

Bent at nearly a 90% angle, she frequently bumps her head, and has difficulty doing ordinary things like sipping coffee.

rogers hartmann
Rogers is determined to inspire other folks who live with dystonia…even from her 90-degree-angle view. Source:

At 37 years old, Harman was once an athletic, active, and healthy person. One morning, though, she woke up feeling like she had a stiff neck, with her head tilting to the right. Days later, her muscles were fully contracted bending her body to a 90% angle, and leaving her in constant and severe pain. It’s not uncommon for her to have 15 or 20 debilitating spasms a day.


Dystonia is a neurological disorder that causes involuntary muscle movement, and there is no cure.

In the wellness blog, PositivelyPositive, she describes “remembering a different me,” and details her struggle to live a so-called normal life. Hartmann receives Botox injections periodically to help with the pain, and continues to work as a television producer.

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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