Here are my favorite places to learn more about Dysautonomia:
- Dysautonomia International “is a non-profit that seeks to improve the lives of individuals living with autonomic nervous system disorders through research, physician education, public awareness and patient empowerment programs.”
Dysautonomia Youth Network of America (great for child-based information)
Also aimed at “Promoting Awareness, Support, Research and Recovery,” the Dysautonomia Youth Network of America (DYNAINC) is specifically for children and teens. The information is still abundant and relevant to all patients. For example, information that can help younger patients with specific issues such as setting up an individual education plan is still useful to adults who may need to request workplace accommodations. This site also provides a good focus on the socialization and peer issues.
The Dysautonomia Project
The Dysautonomia Project is “a not-for-profit collaborative effort of hundreds of volunteer physicians, patients, and community leaders.” The Founding Director, Kelly Freeman, also suffers from Dysautonomia. She co-authored an educational book for both physicians and patients, also available on Amazon or the The Dysautonomia Project website. “Join the fight to reduce time to diagnosis from 6 years to 15 minutes.”
Awareness: Christina Tournant’s story
Christina Tournant’s story is becoming known to many with Dysautonomia. Her heartbreaking story exemplifies the need for awareness, research and empathy. Doctors dismissed the severity of what was happening with her body, physically and mentally. As many Dysautonomia patients, she silently tried to push through her symptoms. Her mother, Tava Wilson, now carries Christina’s memory forward with the Dysautonomia Project. Watch her story here.