Sunday, September 5, 2010

Midodrine vs The People

Well, it is amazing and a testimony to grass roots efforts, that through all your letters & phone calls, the FDA reversed its decision. Now it will allow what I think is 'compassionate use' of midodrine until the paperwork is properly done. While the midodrine 'scare' did scare many of us, I did take refuge in knowing that it could still be purchased from Canada, for example.

At least they didn't take the insulin away from the diabetics.

I like to envision dysautonomia much like diabetes. It is an invisible disease, with end-organ damage & disability & a need to monitor daily. The person with diabetes gets blood glucose (sugar) checked; the person with dysautonomia gets the Tilt Table Test for diagnosis. Some people have 'brittle' diabetes, some people have 'brittle' dysautonomia. Both diseases require a complete change in lifestyle. No more eating that big huge piece of chocolate cake for those with diabetes; no more standing up from a chair on a hot day for those with dysautonomia.

If the person with diabetic does not receive adequate medical care, the diabetes can lead to gastric neuropathy, peripheral neuropathy, hyperglycemia and/or hypoglycemia, glaucoma, gangrene of the toes, kidney failure & diabetic coma and death.

If the person with dysautonomia does not receive adequate medical care, the dysautonomia can lead to immediate consequences also: syncope, falling, bodily injuries, seizures, dehydration, depression, frustration, and a litany of troubles. Being bed-ridden and all its consequences: fallling risk, hygiene issues, inability to shower or brush teeth.

On this fine note, I am getting called down for dinner so I will continue this later.
Hoping that everyone takes to the telephones to contact their State Medical Board Examinations so that dysautonomia can be taught in medical schools and as a new continuing education requirement.

That is my prayer for you, and for us.
Bye for now and I'm getting out of bed to eat dinner with the family. My hair is sticking straight up in the air, but I know that they don't care. :-). LoLv to you all & thank you for all the fine comments. :-).

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