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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