Harv update and PSA on CTCL

Pardon the wonkiness of this layout. It's for your protection :-).

So here are pix of Harv on 3/24 about 2 1/2 weeks after the last photos. Whether the last photos were misleading or he's put on some weight, I like his look here better.


  I'm breathing a sigh of relief.

While I wanted to share the good news about the Harvster, I also wanted to use these photos to put the skin pix below the fold -- at least a little. Again, they aren't bad, but I don't want to subject anyone to a medical issue on this blog which is, after all, about horses.


Bob's situation: Cutaneous T-Cell Lymphoma (CTCL)
Because Bob is out and about, and going to the gym, and working, and cycling, and contra dancing,  you can certainly make the case that he is doing really well. He's not a complainer, so you won't hear him fussing about his condition. There are many conditions that are painful while outwardly you look pretty good. But this rare disease can, in later stages, be pretty awful inside and out.  In one keynote speech at a world conference on CTCL, the speaker called CTCL "one of the most disfiguring diseases known to man today." When it is not controlled, it can be compared to leprosy. In the interest of spreading the word about CTCL here is a picture of his skin.

This is the back of his upper arm, a reasonably close-up shot. You can see it is red-patchy, and from any sort of distance you lose the mottling and just see bright red. It is extraordinarily itchy (pruritis), periodically it is flaky, and it looks and feels a lot like a bad sunburn. And -- it's all over his body. Head to toe. All the time. For the last two years. Back when they were trying to diagnose what this was, they  they could not even do an allergy test  because he didn't have a clear patch of skin to test. He has other symptoms too -- hair loss, nail problems, and hands and fingertips cracking.

For the first two years Bob was told he had psoriasis, after routine diagnostics including skin biopsies. I searched google scholar and medical databases with terms like "full body rash" and "erythroderma" -- and guess what? CTCL was among the search results. When I asked the doctor about it, he gently dismissed the question with the response, "people who have that are very sick." This was not a crappy doctor either -- this was at UPenn.

 CTCL: a Public Service Announcement
CTCL is rare -- only about a thousand cases are diagnosed a year -- and not much is known about it. Unfortunately many doctors only heard about it while they were in med school, and they may never have seen a case -- don't count on them to recognize it. Its incidence is increasing dramatically -- it's rising faster than melanoma. In fact, all lymphomas are seeing a rise in incidence. CTCL is most likely to occur:

• In people over the age of 50
• In men more than women
• In black men more than white men
• in a very slow progresson (some people have had a rash or skin coloration since childhood)

It's usually misdiagnosed for years, in part because of its rarity (six cases per million) and in part because tissue biopsies and other tests are not very good at detecting CTCL till it is more advanced. Bob's case is unusual in that it was a sudden, dramatic onset. Often the 'rash' people have had since childhood suddenly starts to get worse, and then they find out they have CTCL.

Take Home Message: If you have, or know someone with,  worsening psoriasis, or with a persistent bad rash, and they fit the traits listed above, mention this to them. Believe me you want to catch it early.

Not "just" psoriasis
BTW I'm not making light of psoriasis and would never say "just" psoriasis. I have a new respect for people with psoriasis. When Bob was initially diagnosed with it I joined a few support groups and the stories of people with psoriasis -- especially young people -- are heartbreaking.  Psoriasis can be debilitating, and the drugs are expensive. Many, many people can't afford them.

Thanks for listening.