Katie’s Story

I’m 44 years old with 3 children and was diagnosed with Urticaria Pigmentosa about 10 years ago. This happened purely by coincidence whilst I was visiting a dermatologist to have a suspect mole investigated – I’d actually been suffering with this strange rash that sometimes became raised and inflamed since my late teens! I underwent 2 courses of PUVA treatment with a very small improvement in the brown spots that, at that time were just on my outer thighs.

About 8 years ago I began experiencing other symptoms – stomach cramps and acute diarrhoea, palpitations, dizzy spells and bouts of extreme fatigue. I visited doctors time and time again, was frequently fobbed off but twice referred to specialists for cameras up, cameras down, etc. After 2 years I was told I must have IBS and just to take Imodium [loperamide hydrochloride]. Again, quite by accident, whilst researching UP on the internet I realised there may be a connection between all my symptoms and that I may be suffering from mastocytosis. I asked for another referral to my dermatologist to check this out and luckily it was a new doctor who took me seriously. She confirmed after blood tests and x-rays that this was likely and as it was so rare the only advice she could give me was to avoid foods containing salicylates and glutamates. I also saw a dietician who gave me some good advice on which foods to avoid. I was prescribed antihistamines:- hydroxyzine and cetirizine.

Finding the Masto support group was a great step forward for me as it has given me the support, knowledge and confidence I needed – many thanks to all for caring! I have been able to ask my doctor for prescriptions for Nalcrom and a referral to a haematologist to have my condition investigated fully. I am currently awaiting an appointment for a bone marrow biopsy.

[urticaria pigmentosa, UP, skin rash, UV treatment, fatigue, gastrointestinal symptoms, adult]