Friday, October 19th, 2018
My son Lester (10 months) was diagnosed with CM/UP [cutaneous mastocytosis/urticaria pigmentosa] when he was 3 months old. He was born with only 2 blisters but over the weeks he developed many, many spots. He is pretty much covered from head to toe. The spots on his face are flat and less red so some
Friday, October 19th, 2018
Clement was around 2 months old when his first spot appeared on his tummy. A few more started appearing on his tummy and back then when he was 5 months old we went to see a skin specialist who diagnosed UP [urticaria pigmentosa]. More spots appeared on his torso, also a few on his arms,
Friday, October 19th, 2018
My name is Marcia and after a wonderful (first) pregnancy I had Samantha by emergency C section. I remember when they lifted her out of my tummy I looked at her hands. I noticed what looked like a heat lump on the middle knuckle on her right hand but I didn’t think anything else about
Friday, October 19th, 2018
My name is Louise, my son Julian is age four, he will be five in three weeks. He was diagnosed with UP two months ago. Julian got chickenpox when he was four months old. He was left with small marks on his skin. For years I assumed they were from the chickenpox. I had no
Friday, October 19th, 2018
I’m Kylie and we have three daughters, my youngest Lucia is aged 7 months. Here is a bit about Lucia’s condition. Lucia was about 4 months old when she was diagnosed with Urticaria Pigmentosa, she had the spots on her body for about 2 months beforehand but the GP had no idea what they were
Friday, October 19th, 2018
Maya, who has had UP [urticaria pigmentosa] since about 3 months, is now doing really well at 11, she has recently been getting better and better. As I have often said to other parents – there was an improvement in Maria’s Masto from when she was 3 – 4 but it was then very gradual,
Friday, October 19th, 2018
I have 2 children one with mastocytosis, the cutaneous version. She is 18 months old and was diagnosed when she was about 6/7 months. I will be requesting Epipens, although Amber hasn’t shown any anaphylactic tendency just knowing it is possible I want to be prepared, this was all news to us! Also she has
Friday, October 19th, 2018
Lara (who is now nearly 16) had the 50 pence sized, fluid filled blisters on her head when she was just under 1 year old. We were fortunate to be referred to a hospital, where it was decided that she had Urticaria Pigmentosa and Mastocytosis and gave us two Epipens [epinephrine] and prescriptions for ketotifen
Friday, October 19th, 2018
Jon is now over 18 is doing great. He did not keep well for many years and nothing seemed to make much difference. He was diagnosed with masto when he was 4 months old. His doctors started him on Gleevec [imatinib] about a year and a half ago and although there were side effects in
Friday, October 19th, 2018
My son Austin (21 months) was diagnosed with UP [urticaria pigmentosa], I noticed red/brown patches on his back from about 6 weeks old and mentioned it to my health visitor – she told me it was eczema; I then spoke to a GP and they said the same, so I left it. I then took
Address registered with the Charity Commission:
86-90 Paul Street
London
EC2A 4NE
Registered name:
The UK Mastocytosis Support Group
Charity number is:
1201970