UK Masto - Support, Advocacy, Research

Vision for UK Masto:

To help deliver a cure for Mast Cell Diseases including mastocytosis and mast cell activation syndromes, and ensure all those with these diseases receive early and correct diagnoses, optimal treatment, and the emotional support they need.

Goals of UK Masto:

To support Mast Cell Disease patients so they can better understand their disease; to be the patients’ voice as advocates with all key stakeholders; and to be lead proponents and supporters of world class research into all forms of Mast Cell Disease; delivered through a world-class charity.

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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 

Elaine’s Story
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 

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. 


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