Friday, April 6, 2012

How Rare Is It?

We have reached a point where it is getting nearly impossible to find doctors who can help; the rarity of the disease was bad enough but we have moved beyond that now, to a land where doctors haven't been. We are now trail blazers. To help you understand, here are some statistics (believable or not), as they relate to Alex...

One in a million people are diagnosed with Cushing's Disease in the U.S. every year
Only 10% of those diagnosed are children (Alex was 14)
Possibly 10% of those are cyclic (Alex is)
Most (60-90%) are cured with one pituitary surgery (her tumor couldn't be completely removed)
Nearly all (95%) are cured with bilateral adrenalectomy (hers was not a cure, only a remission)

It's like being attacked by a bear and struck by lighting on the same day. Alex isn't one on a million, she's one in a billion, or maybe that's trillion? Math was never my thing.

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