Stories

It is important to recognize that while there can be very intense phases with dysautonomia conditions (medically and emotionally), once treatment starts patients usually begin taking steps forward in their recovery process.

We invite you to explore a very small sampling of stories from a few of the extraordinary young people DYNA has served over the years. When reading their stories, please be aware that they were written at various times in their illness/recovery process. Most of these amazing young people have since fully recovered or significantly improved.

It is essential that patients always look toward the future and try to maintain a positive attitude. Coping successfully requires a balanced mixture of practical skills and mental attitudes. Advice about maintaining a positive attitude may seem infuriating when you’re in pain or exhausted. However, there are certain attitudes that have been associated with patients who live successfully with and/or recover from childhood dysautonomia conditions:

  • Take life one day at a time. Tomorrow is another day.
  • Accept the challenge. Consider the hardships as challenges to overcome.
  • Accept the path you are on and reject using your energy on “why me?” attitudes.
  • Learn about your condition from reliable, honorable resources and avoid misinformation from unqualified sources.
  • Don’t pollute your brain with drama from individuals who are not coping well and living pity parties.
  • Take responsibility for the parts of recovery you have control over (fluid and sodium intake, physical activity, sleep hygiene). If you don’t do your part – don’t expect to make forward progress!

Individual stories from this site are not to be reproduced without explicit consent from DYNA, Inc.

Story title Author Age Locationsort descending
Bedtime Reading Shana 22 California
Learning to See Laura Engebretsen 14 California
Emily's Story Emily 17 Canada
Amanda's Race to Recovery Amanda Connecticut
Kate's Story Kate 23 Illinois
Virginia's Story Virginia 17 Indiana
Melissa's Story Melissa 16 Indiana
Danna's Story of Hope Danna 16 Iowa
Dysautonomia Kellie B. Kentucky
Mandy's Story Mandy 11 Maryland
Sophie's Story Sophie 18 New Zealand
Glass Pain Sophie 18 New Zealand
My Story Juli 17 Ohio
Ashli's Story Ashli 17 Oregon
Becky's Story Becky 12 Pennsylvania
Erin's Story Erin 27 Scotland, United Kingdom
Joanne's Story Joanne 21 Singapore
POTS and Wellness Linda (Simone's Mom) South Dakota
The Race Sarah 13 Virginia
Katie's Story Katie 22 Virginia

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