My large acrylic painting, “Stampede,” will help patients with dysautonomia find support they need and raise money for research to find acceptable treatments and cures for the disease. The first item to feature “Stampede” are Popsockets, mobile phone accessories that help people hold their phones. A portion of the proceeds will be donated to Dysautonomia Support Network to help fund research, create awareness and provide support for the estimated 70 million human souls worldwide who suffer from dysautonomia.
Dysautonomia is a malfunction of the autonomic nervous system. It can malfunction in several different ways and accompany many different conditions. Ehlers-Danlos Syndrome, a genetic collagen defect I have, is often accompanied by one or more forms of dysautonomia. The autonomic nervous system controls automatic functions in the body, so failures in the system causes me problems with oxygen levels, digestive functions, circadian rhythms, body temperature, heart rate and blood pressure.
My most difficult symptoms are from postural orthostatic tachycardia syndrome (POTS) and neurocardiogenic syncope (NCS). Simply put, I cannot stand still for longer than a few minutes without blood pooling in my lower legs. With each heartbeat, less oxygen makes it to my brain, my heart rate increases (tachycardia) and my blood pressure drops. When my brain is depleted enough, I pass out (syncope). This is made worse by many things: heat, climbing, lifting heavy items, raising my arms above my head, hot showers, dehydration, plane flights, bed rest, cardio exercise, drinking alcohol, illness, and high altitude.
It is also incurable, few doctors understand it, and few treatments exist; I have found very little relief. I do my best by avoiding any of the activities I mentioned above, staying well hydrated and eating a lot of salt to help keep my blood pressure up.
It interferes with my life in a big way. I cannot be too active; nor can I be too sedentary. I cannot work a job that requires much standing. Most activities outdoors over 75 degrees are completely off limits. Flying anywhere takes a week to prepare and a week to recover. Often I pass out on the flight or after deboarding. It causes embarrassing situations that cause others to panic and require explanations that aren’t simple or easy. I find myself avoiding activities or experiencing symptoms many times every day.
POTS and NCS are not fatal, but it is debilitating to a frustrating and depressing degree. It keeps me from doing a lot that I want to do, but more importantly, a good deal of what I need to do to survive. We need answers and solutions for this disabling condition.
Research is gaining notice and progress is being made. That’s why I am proud to be associated with organizations like Dysautonomia Support Network.
To buy your own super-cool zebra Popsocket, follow this link here:
To learn more about Dysautonomia Support Network, visit their website: