I have a rare genetic condition that went undiagnosed for 18 years

September 11, 2018 | 13m 00s

A woman diagnosed with a rare genetic condition struggles find to advocacy and support from health professionals.

Story Transcript

A transcript for this story does not exist. If you're a researcher who is transcribing this story for research purposes, please email the transcription to us.

STORYTELLER ATTRIBUTES
20 - 29
Female
College graduate
White
1xxxx
Patient
STORY TYPE
Systemic issue
Genetics/Birth Defects; Having multiple health conditions at the same time
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
Share your health story

Share your own story to help others understand what it is like to live with health problems.

Resources

Wondering what it's like to be a patient partner in a clinical study? Here are some links to resources.

Copyright 2019 | PaTH Network