Many patients with Dysautonomia and it's related conditions, struggle to receive a proper diagnosis, treatment plan and are labeled to have an anxiety disorder or "it's all in your head" diagnosis.
Dysautonomia is very real. It is extremely debilitating, demoralizing and misunderstood. Physician's, family, friends, co-workers, etc. often fail to understand the depth of the disorder and it's affect on the patient. Far too often patients are left to deal with this disorder on their own. Lacking the proper medical treatment and living life feeling very isolated, helpless and without hope. I have experienced this first hand. I have also heard countless stories from so many others who struggle to have their voice be heard and taken seriously. We get rejected or get passed on from one physician to another. There are very few experts in the US and throughout the world who are able to effectively diagnose and treat Dysautonomia.
Throughout history many medical conditions have been made aware by the voices of the patients. Those who refused to be silenced and receive inadequate medical care. It is my personal goal to help create a voice for those who struggle and live with Dysautonomia. To take a stand to receive not only a proper medical diagnosis, but also a treatment plan. Every single person affected by Dysautonomia deserves to be treated with dignity, respect and receive the best medical care. It is time for us to RAISE OUR VOICES.