Danette Batson, a Dysautonomia International volunteer residing in Missouri who requested the proclamation, shared, “Due to the lack of knowledge about this disease, it took five years of being completely horizontal to get a proper diagnosis. I don’t want anyone else to suffer that long, not knowing.”
Dysautonomia is an umbrella term used to describe various medical conditions that cause a malfunction of the autonomic nervous system. The autonomic nerves control the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, temperature control, and more. People living with various forms of dysautonomia have trouble regulating these systems, which can result in light-headedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.
According to Lauren Stiles, president of Dysautonomia International, “Over 70 million people worldwide live with a form of dysautonomia. There is no cure for any form of dysautonomia at this time, but Dysautonomia International is funding research to develop better treatments, and hopefully someday a cure.”
“Despite the high prevalence of autonomic nervous system disorders, many patients take years to get diagnosed due to a lack of awareness amongst the public and within the medical profession,” explains Dr. Paola Sandroni, Professor ofNeurology at Mayo Clinic, who volunteers on Dysautonomia International’s Medical Advisory Board.
Since its founding in 2012, Dysautonomia International, a 50l(c)(3) non-profit organization, has been working to increase public awareness of dysautonomia. The organization started the global Dysautonomia Awareness Month campaign that is celebrated annually during the month of October. With the help of community members, Dysautonomia International organizes landmark lightings, 5K runs, fundraising galas, proclamations, social media campaigns and other awareness activities.
To learn more or to get involved, visit www.dysautonomiainternational.org.