Mastocytosis is a sort of proliferation of the mast cells. I’ve got too many mast cells. Some of them are the wrong shape. And they don’t die off as they’re supposed to. And therefore they can congregate in different organs of the body. And by the, main organ is the skin. Which, which I’ve got. You can get mastocytosis which is only a skin problem. But that can often turn to systemic mastocytosis, where it affects other organs. And I’ve got the systemic form of it. So I do get problems with stomach cramps and occasional diarrhoea, that sort of thing. And another unpleasant effect of it is called flushing, where I come over really very very hot. It’s not the same as the hormonal heat. It’s a different sort of heat.
And who told you that mastocytosis was a major factor?
My consultant told me that. In fact he confirmed that to me a few weeks ago. I contacted him when this came and said, could he tell me whether it was the major factor or a contributory factor, my mastocytosis. And he told me it was the major factor and one that could be, well, it wouldn’t be looked for because it’s such a rare thing. And the other factor which is common to most people is the fact that I was post-menopausal. But the mastocytosis was the major factor.
But you see when I was diagnosed just, people just didn’t know about it and that was that. Doctors, don’t know about it now, consultants don’t know about it now. It’s, and it takes so many forms. You can’t have a, a mastocytosis consultant because it affect, can affect your, you know, your liver, your spleen, your, you know, with these anaphylactic attacks, you know, that sort of thing. And all other aspects of, of, it’s complicated. And some people have been found to have mastocytosis when they haven’t had the rash. So that’s, that was very difficult to, to diagnose.
And for how long have you had this rash?
Well, I had the rash for at least, at least five years before I was diagnosed when I was in hospital. Because blood tests revealed nothing and no one knew any better.
