Friday, October 19th, 2018
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
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
Friday, October 19th, 2018
I am Hilary, aged 58. I believe my UP began to appear around the year 2000, though it took four years and three different GPs before referral to a dermatologist who made the diagnosis in 2004. I hadn’t realised that the lumps that were coming up when I was in bed, after a shower or
Friday, October 19th, 2018
I am 59 and I was diagnosed with urticaria pigmentosa in 1985. I was given PUVA treatment which made little effect on the UP other than to make me sensitive to florescent light for about 48 hours. I have had episodes of classic migraine (headache, flashing lights, noise and sickness) which I thankfully no longer
Friday, October 19th, 2018
I am a 70 year old. My first attack was 14 years ago. It started with diarrhoea, face flushing, breathlessness and anaphylaxis. My husband was with me, he phoned the paramedics and then applied CPR as I had stopped breathing. I was rushed to hospital and against all odds I was resuscitated. I spent 4
Friday, October 19th, 2018
I am Elaine and I have had SM [systemic mastocytosis] for 3 years but it was only when I had been going to a dermatologist 9 years and now a new consultant. He did biopsy on my skin then sent me to Haematology, they did a bone marrow biopsy and SM was positive. I am
Friday, October 19th, 2018
I have just turned 70. Urticaria Pigmentosa hit me 29 years ago – I do feel a bit of a fraud as so far I have had no really bad effects, as far as I know. All my body – except my face – is reasonably heavily spotted. I do get tired – but cannot
Friday, October 19th, 2018
I have had Urticaria Pigmentosa (UP), a form of mastocytosis, since in my late twenties (I am now 65), which my consultant assures me is cutaneous, not systemic. However, the spots each year get gradually worse, especially on the outer thighs, where they now look almost like strawberry marks as the spots are joining together.
Friday, October 19th, 2018
I’m Caroline and would like to fill you in on my history. I’m 59, married, with 2 sons in their 20’s. I was diagnosed with Masto/Urticaria Pigmentosa 17 years ago and by the first consultant. I continued to see him for many years but government cutbacks meant he wasn’t allowed to see dependants any more
Friday, October 19th, 2018
I am Belinda, and I have been ill throughout my life (now we have realized that it was mastocytosis but hadn’t been aggravated like now). In summer 2004 I became really ill. My year was full of stress and anxiety and very hectic. My parents had split up in the new year, I had a
Address registered with the Charity Commission:
86-90 Paul Street
London
EC2A 4NE
Registered name:
The UK Mastocytosis Support Group
Charity number is:
1201970