Dysautonomia International
Learn More
Get Involved
Press Room
About Us

For Patients

For Researchers

For Physicians

For Family and Friends

For Educators

For Employers

Like us on Facebook Like us on Facebook
Connect on Linked-In

Follow us on Twitter:

Exercises for Dysautonomia Patients
Lifestyle Adaptations for POTS
Find a Support Group
Medical Journal Articles on POTS
Dysautonomia Patient Stories
Salty Meals and Snacks
Home >> Postural Orthostatic Tachycardia Syndrome >> // Multiple System Atrophy >> // Neurocardiogenic Syncope (NCS) >> // Syncope/Neurally Mediated Syncope >> // Learn More >> Dysautonomia Patient Stories

Dysautonomia Patient Stories

We asked dysautonomia patients to send in their personal stories to share on this website. We received hundreds of stories, and picked a few that seemed representative of the others with the same diagnosis.

Almost all of the stories have a common theme - a long and difficult road before the patient was accurately diagnosed, and that road is often fill with many misdiagnoses, or too often with patients leaving a doctor's office without any answers, feeling frustrated and let down. It doesn't have to be that way. With educational outreach to the medical community, advocacy in the halls of government, and by providing accurate information for patients and caregivers, Dysautonomia International hopes that in the future, patients will not have to wait so long for answers. We look forward to the day when a patient can walk into the local family practitioner's office, their physician would be able to identify the basic signs of dysautonomia, refer the patient to a local expert, and the patient could be accurately diagnosed, so that he or she could begin treatment right away. It can happen, but it's going to take lots of hard work to get us there.

We hope that these stories will help educate physicians and the public, so that the time it takes to diagnose autonomic disorders can be reduced. The sooner these disorders can be diagnosed, the sooner patients can begin proper treatments, and the more likely they are to feel better and potentially even recover from a debilitating illness. We also hope that some of the patients reading these stories will feel less alone on their journey.

NCS/Syncopal Disorder Stories
Jordan's Story

POTS Stories
Amanda's Story
Lindsay's Story

PAF Stories

MSA Stories
Ed's Story

Stories About Other Forms of Dysautonomia
Erica's POTS/Autoimmune Autonomic Ganglionopathy Story

  © Copyright 2012 Dysautonomia InternationalMedical Disclaimer