Medical organization

A very good and informative post.

Daughter of a bookstore Owner

When a close family member of mine was diagnosed 20 years ago with a disorder that no one heard about before, I was too little. I was this cute little girl wearing a pigtails and a dress that made my mother have to keep reminding me to stop climbing on things, and to keep my knees down so I could stop flashing people around us.

I barely remember the visit, but I do remember the doctor stressing that this was the time to take matter’s into out own hands. That this was one of these diagnoses that most doctors do not understand at all. We would have to have our research to show them, and it was important to keep our own copies of everything so we could take them to the specialists when we started seeing them.

That stuck.

While we started small at the time, this turned into…

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