Every Patient's Advocate

An End Of the Year Revisit — SPTCL and Misdiagnosis

If you’ve read this blog for awhile, then you know 2008 was the year of SPTCL misdiagnoses.

SPTCL, subcutaneous panniculitis-like T-cell lymphoma, was the rare and deadly lymphoma that kick-started my work as Every Patient’s Advocate.  I was told I had it.  In fact, I was told by two labs and an oncologist that I had it, and had only a few months to live.

But I didn’t.  And I’ve written extensively about the fact that I didn’t have SPTCL and what I did to figure that out.

Earlier this year, in May and then July, I was contacted by two others who were dealing with the same diagnosis of SPTCL.  Heather contacted me, then Daniel’s mother contacted me (Daniel is a teenager).  They had found my work on the web and asked if I could help them get the information they needed.

So I did.  And we learned that both Heather and Daniel had been misdiagnosed, just like I had.

Fast forward to today — the end of the year, and holiday time. I checked in with both Heather and Daniel to make sure they are still doing well.  And yes, they most certainly are!!

I still choke up.  It’s still a bit overwhelming.  That’s three human beings, all of whom shared a misdiagnosis, none of whom underwent chemo, all of whom are healthy today.

Which is precisely why I do this work.

Here’s to even more great discoveries and saved lives in 2009.

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