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
Thursday, October 18th, 2018
Shortly after Helen was born we noticed spots on her bottom. These later spread to the whole of her torso, front and back, some down her legs and up to her neck. On a couple of occasions, mainly in shops when she got too hot, the spots would become red and angry-looking. I took her
Thursday, October 18th, 2018
Our son Mark has Cutaneous Mastocytosis. I guess he is pretty rare as only about one in 400,000 – 500,000 in the UK has this condition. Sounds quite cool but actually it kinda’ sucks as it took many months and wrong diagnoses to figure out why our son is so “spotty” and what caused his
Thursday, October 18th, 2018
Marina my daughter has Diffuse Cutaneous Mastocytosis (DCM) and she is now 26 months old. We had a long battle to try and get her diagnosed; she was finally diagnosed at 15 months old. At the age of 9 months she would crawl around and with any knock or bang she would blister. She gets
Thursday, October 18th, 2018
I have two boys with mastocytosis, Alex 12 years old has Systemic Mastocytosis and was diagnosed at the age of two. He has an enlarged liver and spleen and a low platelet count. By the age of three and a half he was also diagnosed with an Immune Deficiency with a sub group IgA and
Thursday, October 18th, 2018
Jay is 22 months old and was diagnosed with Urticaria Pigmentosa when he was about 13 months old, although he has suffered with it from when he was a few days old. He has a rash all over his torso and legs most of the time and suffers from stomach cramps and loose stools.
Thursday, October 18th, 2018
Mandy first showed her marks at 8 weeks old and they steadily progressed from there; I had been told by many GPs that it was eczema. At 8 months old I asked for her to be referred and for the next four months she had tests for everything. No one knew what it was but
Address registered with the Charity Commission:
86-90 Paul Street
London
EC2A 4NE
Registered name:
The UK Mastocytosis Support Group
Charity number is:
1201970