...it's difficult...it turned my life upside down.

August 02, 2021 | 43m 40s

This storyteller shares the experience with a rare genetic disorder;Having fallen into a canontonic coma after a seizure, listen as the storyteller shares their journey through their generational health history and getting involved in research.

Story Transcript

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STORYTELLER ATTRIBUTES
50 - 59
Female
More than a college degree
White
1xxxx
Patient
STORY TYPE
Blood, Heart and Circulation; Bones, Joints and Muscles; Brain and Nerves
COVID-19; Brain and Nerves; Genetics/Birth Defects; Mental Health; Having multiple health conditions at the same time
Experiencing symptoms; Finding out a diagnosis; Being treated; Getting tests or advice for how to be healthier; Communicating with doctors and nurses; Making decisions about the right health care or treatment for you; Describing how easy or hard it has been for you to get the health care you need; Getting health care that is right for your rare genetic disorder
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Resources

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