Friday, October 19th, 2018

Mandy’s Story

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

Lorna’s Story

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

Lesley’s Story

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

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 


Friday, October 19th, 2018

Julian’s Story

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

Judy’s Story

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

Jean’s Story

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

Jackie’s Story

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 


Friday, October 19th, 2018

Jason’s Story

I am 29 years old and am currently being seen by a consultant at a local hospital. Hopefully he will sort out an appointment with an SM [systemic mastocytosis] specialist soon. I first noticed the pink freckles appearing about 4 years ago and so went to the doctors where they told me it was acne. 


Friday, October 19th, 2018

Iris’s Story

I was diagnosed with Urticaria Pigmentosa in 1983 and things remained calm for most of the time except if I was in the sun, or having a hot shower. I was covered in Pigment marks on most of my body and limbs but not my face. This was till around 8 years ago and things