My girlfriend has a disease called postural orthostatic tachycardia syndrome (with adrenal dysfunction)and she is 21 years old. If you don't know what that is(Don't worry, I didn't either) you can check out a website called dinet.org that seems to be base point for all affected. POTS (as it's called) tends be brought on by a serious viral infection that infiltrates the brain and/or the spinal chord thereby making her autonomic functions less affective, less balanced, and generally causing disarray to most major systems. It is most commonly characterized as the bodies inability to compensate to gravities affects, also known as orthostatic intolerance. She currently has health insurance that pays for a large part of her specialized expensive care, but not large enough to unburden her family. When she turns the age of 25 , which normally would have been 22 had an extension not been granted, she will lose the ability to fall under the umbrella of her parent's health care. If you have not guessed, she will be uninsurable. She is also unable to work. The worst part of all of this, is that POTS is a dense forest, but not a large one. She will eventually come out the other side but only if she gets the best care she can. Sometimes it's 5 years (currently in her second year) but sometimes it's 20. Sometimes it's life. Care in this is so new that most doctors treat it like anything else that's autonomic and rare. They just try to pass it off to another field of medicine and treat it with heavy medication and often times calling it in part psychological when it's neurological and cardiovascular. Being where we are she has great physicians, but that care is not cheap and if you cannot afford them, you do not see them. Please pass a bill that would allow my girlfriend to get the care she needs. I love her.
| people should hear this |
Flag this story as inappropriate



