DINET recommends:
Compass Points the Way by Alexis Kline is the story of a young life interrupted, as told by a young woman living with POTS. The book gets to the heart of many shared experiences that people go through when a healthy life shifts to a life with chronic illness. This is a worthwhile read for patients and caregivers of any age learning to live with a chronic illness. Read a preview of the book on Amazon bit.ly/3LBK9q3

2017 Age of Onset Survey Results

April 3, 2018

During the summer of 2017, DINET conducted an informal survey that asked questions about the age of onset of dysautonomia symptoms, diagnosis and the experiences our female members had during the diagnostic process. The survey results contained in the pdf below show the raw numbers collected from respondents answers, as well as selected written answers from respondents. Many women shared their stories within the survey answers and the similarity of experience was striking.

This was not a scientific study and the data presented represents a sampling of information and opinion and should not be interpreted as research.

Special thanks to Trudi Davidoff for writing the survey and compiling the results.

Survey_2017.pdf

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Edited April 3, 2018 by edriscoll