Friday, October 19th, 2018

Andrea’s Story

My name is Andrea and I developed the first signs of urticaria pigmentosa at about the age of 24 and I am now 43. I stopped going to see my consultant some years ago as it was simply a case of saying “Hello, keep taking the antihistamines and see you in 12 months time”. I 


Friday, October 19th, 2018

Alice’s story

I am a mother of 2 grown up children and was widowed in 2007. After several years with what looked like freckles increasing on my legs I started to suffer from several different unusual symptoms, the worst being excruciating pain in my feet. I would go backwards and forwards to the GP with what seemed 


Friday, October 19th, 2018

Rowena and Lester’s Story

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

Megan and son Clement’s Story

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

Marcia and baby Samantha’s Story

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

Louise and Julian’s Story

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

Kylie and daughter Lucia’s Story

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

Kirsten and daughter Maya’s Story

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

Kelly and daughter Amber’s Story

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

Katie and daughter Lara’s Story

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