Mandy’s Story

About three years ago, when I was 47, I noticed what seemed to be big brown freckles on the backs of my right forearm. They continued to appear, now on both arms, and a friend eventually said that it looked like a rash, and I should go to the doctor. It didn’t look like a rash to me — brownish, rather than red, not raised at all, not itchy — it didn’t do anything, it was just … there, although it did turn more red in the gym, or if I was too hot.

I took my time but eventually went to the doctor. He thought it might be a reaction to being in the sun while on tablets (for other conditions) that had directions saying to keep out of the sun. So I started wearing sunscreen religiously — products for children with sensitive skin — with the result that when I did have to be in the sun on one long drive (on holiday in America) I got a new rash on my face, which turns out to be an interaction between the sun and the scent in the sunscreen cream. And it’s permanent. Great.

The spots continued to appear. They started to run together into larger spots. My desk is in the front window of the house, and on sunny days, I even wore a sunhat. By the next summer, I told the doctor that something else had to be going on — I’d spent the WINTER, INDOORS, in ENGLAND, wearing SUNSCREEN and sometimes a HAT and I was still getting these out-sized, freakish-looking freckles.

I went to a local dermatologist who did a biopsy and the pathology report came back saying it was TMEP [telangiectasia macularis eruptiva perstans], a type of mastocytosis, but the junior dermatologist who was seeing me said she wasn’t confident enough of what was in the report herself, and sent me to the senior dermatologist. She apparently knew what I had, but her explanations were perfunctory and unhelpful, although I’m sure she meant to be helpful. At the time, though, I just thought that the explanations that the dermatologist gave me couldn’t be right — that turned out to be in part because the dermatologist hadn’t given me the whole story.

I found this group and through the group found a particular consultant and asked my GP to refer me. He was willing, but thought, I gather, that the local NHS Trust wouldn’t want to pay for that, and that I should go back to the dermatologist, express my concerns, and ask for a second opinion. I was scared to do that; it felt like I was telling the dermatologist that she didn’t know her job. I wrote her a letter instead, and it still sounded like that.

I ended up arranging with the consultant to see him privately, on the understanding that if he felt I needed to remain under his care, he would switch me to his NHS list. He explained everything and recommended some tests, which I haven’t had yet, but he does concur, at this point (without having actually seen the skin biopsy report himself) that it’s TMEP.

The main thing I’ve learned, though, is how little is known about this condition. I’d like to do whatever I can to help get some studies going, so that we can learn more. The main obstacle to studies on TMEP has apparently been that there aren’t enough people with it to study them, and with this group, maybe we will get together a large enough pool of people with TMEP that the doctors can learn more, and figure out how to help us.

The consultant offered me steroid cream to fade the spots, which are now on the backs of my hands as well, and said the only other things I can do is to cover them with makeup. I think the world is just going to have to take me as I am. I’m spotted — so what?

[skin spots, TMEP, telangiectasia macularis eruptiva perstans, adult]