Friday, October 19th, 2018
I currently take ranitidine, loratadine, sodium cromoglicate, montelukast. I took interferon A for the past seven months but it had no effect. My main symptoms are headache, stomach problems, severe bone pain and extreme exhaustion. I had a third bone marrow biopsy to confirm the gene affected. I have had two bad reactions to the
Friday, October 19th, 2018
I am 49 years old and was diagnosed with Mastocytosis at the age of 16. I have extensive UP, covering most of my body except my face and I have some systemic symptoms – like enlarged liver and spleen. The only adverse side-effects I have is that I do have reactions to anything alcoholic (although
Friday, October 19th, 2018
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
Friday, October 19th, 2018
I was initially diagnosed with UP [urticaria pigmentosa] in 1987 at the age of 42. We had been on a hot holiday to Greece and I had rashes on my legs that did not disappear. My GP referred me to a dermatologist, who gave the diagnosis of UP after a biopsy of one of the
Friday, October 19th, 2018
I was diagnosed with UP in 1987 and I am now 59. The only symptoms then were an ugly rash on my body and legs which got worse in the sun and heat. In October I had a sudden collapse, unconscious for over 3 hours, flushing, diarrhoea and vomiting. The hospital consultant and GP think
Friday, October 19th, 2018
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
Friday, October 19th, 2018
My name is Julian, born in 1967 in Brussels, Belgium, but British by passport and heart, and leading a peripatetic life ever since. I consider myself one of the luckier ones of this group – I “only” have UP, a mild slightly annoying itching which is triggered if I take too much of any of
Friday, October 19th, 2018
Seventeen and a half years ago when I was 57 I was admitted to hospital after having five spinal fractures in less than five months and as a consequence lost five inches in height. I was diagnosed with severe osteoporosis. During my month’s stay the doctors were concerned about my spots/rash on my thighs inner
Friday, October 19th, 2018
I am Jean, aged 41 and have systemic mastocytosis, as well as diabetes and an underactive thyroid. I’m married and have 2 children aged 18 and 15. In 1998 I woke during the night with severe flushing of my face neck and arms, itchy palms, racing, pounding heart, head feeling like it wanted to explode
Friday, October 19th, 2018
My name is Jackie. I am 39 and married with 2 children aged 15 and 12. I was diagnosed with UP when I was 20. I was told by a dermatologist that there was no cure and to expect more spots by the time I was 30. I have a lot of spots on my
Address registered with the Charity Commission:
86-90 Paul Street
London
EC2A 4NE
Registered name:
The UK Mastocytosis Support Group
Charity number is:
1201970