Dysautonomia Advocacy Foundation is working to establish a permanent Research Chair of Autonomic Disorders in the Division of Cardiology at the Medical University of South Carolina, a critical first step in seeding dysautonomia research and education in medical schools nationwide.
One of the greatest barriers to a patient with dysautonomia is the lack of knowledge about these disorders within the medical community. This makes obtaining an accurate diagnosis long and frustrating, with many patients being told their illness is all in their head or being treated for conditions that have nothing to do with their actual dysautonomias.
For those who have been diagnosed, getting the right treatment can mean having to travel all over the country to find specialists who know about their conditions, and having to advocate for the right care in emergency situations among medical personnel who are unfamiliar with dysautonomias.
Dysautonomia Advocacy Foundation is working with MUSC to establish a clinic and laboratory devoted to diseases of the autonomic nervous system that will train a new generation of doctors in autonomic disorders. These doctors will then filter throughout the healthcare systems nationwide to bring their knowldege into practice and educate other medical professionals.
This ripple effect is crucial to reducing the average time to diagnosis from five years to within a year and helping patients get the right care for them without having to travel the country just to be heard.
By establishing this clinic, MUSC will not only be able to recruit individuals with experience in this specific discipline, but it will also provide support for training, research, and educating medical students and nurses about the disease process of dysautonomias. This single model can be then be duplicated in medical colleges throughout the country, and help speed diagnoses.
During Dysautonomia Awareness Month 2017, DAF held an art exhibition and sale to raise funds for the MUSC endowment. A total of $10,000 was raised for the program.