When I was (mis)diagnosed with SPTCL (subcutaneous panniculitis-like T-cell lyphoma) in 2004, I was handed a book, published in July 2004, that stated that “fewer than 100 cases have been reported in the last decade.”
Yeah — really, really rare. Because that’s a book used by oncologists all over the world.
Then, from Fall 2004 through May 2008, I heard from only two other people dealing with SPTCL diagnoses. One was a husband of a woman diagnosed. One was the friend of a person diagnosed. I never heard back from either one, so I don’t know their outcomes.
You can imagine then, however AMAZED I am, that I have now heard from three people diagnosed with SPTCL in the past four months!
Heather — we worked together and proved she had been misdiagnosed, too. You can read her story on my SPTCL page.
Cynthia — who has struggled and been treated for her SPTCL for two years or so. Here’s her story in her own words.
And now Daniel — a 15-year-old boy whose mother, Sonia, contacted me. Daniel’s diagnosis is HIGHLY suspect, like Heather’s and mine. She’s still in the process of chasing down more details. You can read the latest on Daniel here.
The point? We are developing a community of people who can offer information — and hope — to others who have just received a devastating diagnosis, and are reaching out to others.
You can do the same! No matter what your diagnosis, you can look for other blogs that address it, or set one up yourself. Share information, Vent. Ramble. Get angry. Help someone else — the most important part. We’re all in this healthcare thing together, you know.
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