What I really feel like is super important; is that there needs to be more through communication amongst all these doctors.

September 17, 2021 | 30m 42s

After eight years of managing undiagnosed symptoms, this storyteller shares their health care experiences after being diagnosed with a rare genetic disorder; Myotonic Dystrophy Type 1.

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40 - 49
Non-binary/third gender
More than a college degree
Blood, Heart and Circulation; Bones, Joints and Muscles; Brain and Nerves; Digestive System; Immune System; Lungs and Breathing
Brain and Nerves; Genetics/Birth Defects; Infections, Injuries and Wounds; 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
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