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.
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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