The Sentinel-Record publication did a feature story in July 2016 on a young boy, Seth McDaniel, who lives with his family in Tennessee. Just 11 years old, Seth is living with dysautonomia and Ehlers-Danlos syndrome (EDS).

Both are tough conditions and are inhumanely cruel to be striking little children—especially Seth, a little boy who seems to have a ginormous heart. I hope other children and their parents are inspired by his story. And I hope he and HIS parents are getting the appropriate attention from pharmaceutical companies that may help them!

Why all the sentiment? There’s good reason, sadly.

Dysautonomia

1. A blanket terms that describes several conditions caused by a malfunction of the autonomic nervous system that controls functions in the body such as blood pressure, breathing, digestion, kidney function and even eye dilation of the pupils. In “normal” people, these functions are basically on autopilot but can be fatal for people with Dysautonomia because the body cannot regulate these functions (some or all).
2. While there is no cure, nor are there truly effective treatments, it is extremely difficult for some patients to receive a proper diagnosis because other diseases and autoimmune illnesses can cause this condition such as:
   1. Multiple sclerosis
   2. Rheumatoid arthritis
   3. Diabetes
   4. Sjogren’s
   5. Celiac disease
   6. Late-State Lyme Disease

If the underlying cause of the disease is identified, then symptoms have a better chance of being treated.

Ehlers-Danlos Syndrome

Is basically an inherited condition that affects connective tissues in the body, supporting bones, skin, and blood vessels and is caused by a host of other disorders. EDS affects people differently, is difficult to diagnose, and, if left untreated, can be fatal.

Can I say how touched I was just by looking at the picture of this little boy? Thanks to the Make-A-Wish Foundation, Seth got to experience the thrills and joys of his beloved superhero/sci-fi characters! Make-A-Wish made it possible for him to visit an interactive museum that features Star Wars memorabilia and other superhero stuff.

Do you or your loved one have Ehlers-Danlos Syndrome or dysautonomia? How long did it take for you to receive a proper diagnosis? Please let us hear from you at Patient Worthy!