FND Hope, INC wrote -
What if, from one day to the next, life as you knew it vanished and you weren't able to control your own body's movements?
I never even knew that could happen. But it happened to me.
If that happens, at least doctors will be able to help you get back to normal and resume your life, right?
That turns out not to be true.
Who knew that it isn't unusual for doctors not to know what is wrong with you, even when you are suddenly debilitated by a neurological condition in the prime of life - right when you thought might actually train for a half Ironman Triathlon (which meant running 1/2 marathon, after swimming 1.2 miles and biking 56 miles). I didn't know the medical system wouldn't know what to do with me, but I've learned a lot over the last 3 years, including that if you've got something out-of-the-ordinary, you pretty much left on your own.
What I know NOW is that I'm not alone in this struggle. It is estimated that 1/3 of all neurology patients fall into a mystery/catch-all bucket called "functional neurological disorder(s) (FND)". In 2010, there were 14 million visits to office-based neurologists in the US , meaning nearly 5 million Americans suffer from FND. That is more than Multiple Sclerosis and Parkinson's combined!
The majority of FND patients are disabled by their symptoms, yet few effective treatments exist. It is time for that to change!
FND Hope is a patient advocacy group that is leading the charge to change this. FND Hope has established a scientific registry to connect researchers and patients to advance research and find better treatment options; provides educational materials to physicians, patients, and care-givers; and supports patients through support groups. FND Hope's support has been critical for me to find others in situations like mine and to move towards more effective care. Can I count on you to make a contribution to support this game-changing work?