Jessica Jondle's Book: Roller Skating with Rickets

We’ve been going through some adoption-related heartbreak recently due to misinformation – particularly misinformation related to the fact that I either shouldn’t be alive or that my death is imminent because I’m in my early 30s, which is when I’m likely to die according to some of the rhetoric.

I’m at a place in my life where I am not only content, but also at peace with the fact that I might die tomorrow for whatever reason. (I hear North Korea has some missiles pointed at us on the West Coast, y’all.) I’m grateful for what I’ve had and ready for what may come. But I don’t accept cystinosis as a reason for imminent death.

So I am very glad to see this, published by the NIH:

“Prior to the use of renal transplantation and cystine-depleting therapy, the life span in nephropathic cystinosis was no longer than ten years. With these therapies, affected individuals can survive at least into the mid-forties or fifties with satisfactory quality of life.”

Click here for full article

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