I have always been fair skinned with lots of freckles so didn’t take much notice when on holiday in an extremely hot Corfu in 1986 (aged 23), lots more “freckles” appeared at the tops of my legs. They stayed the same until pregnancy in my early 30’s. Shortly after my first child was born, severe stomach cramps and The Big D [diarrhoea] started. I was diagnosed by my then GP with Irritable Bowel Syndrome. After the birth of my second child, I found I could not tolerate any form of alcohol. I was tested for stomach ulcers but none were found and the pain remains severe to this day if I attempt to have a drink. I also found I was needing to go to bed every afternoon for a solid two hours sleep and put this down to having a toddler and new baby.
Towards the end of my 30’s we moved and our new GP was concerned at the “freckles” which had spread down my legs. I was urgently referred to the local Consultant Dermatologist who diagnosed Urticaria Pigmentosa. He told me there was nothing that could be done. Some patients are referred for PUVA light treatment but that was not possible in my case as being so fair-skinned it would very possibly trigger skin cancer, he said.
At the age of 40 I had a hysterectomy and the spots went crazy. They are now almost everywhere and can no longer be described as freckles – more like Galloping German Measles. I returned to the same Consultant Dermatologist who told me again there was nothing he could do. In desperation I searched Google and found the UK Masto Support Group. I haven’t looked back.
I am now with a Consultant Dermatologist and Consultant Haematologist, who have confirmed via bone marrow biopsy, that my Urticaria Pigmentosa is now Systemic Mastocytosis.
They have prescribed Nalcrom for the cramps / diarrhoea and Telfast [fexofenadine] which is a mast cell stabilizer. The fatigue episodes are now every few days but the rash remains horrid.
[urticaria pigmentosa, UP, skin spots, systemic mastocytosis, SM, bone marrow biopsy, alcohol intolerance, gastrointestinal symptons, adult]