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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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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 

Sylvia’s Story
I had various strange symptoms when I was young including extreme urticaria in sunlight and swelling of the lips and tingling when I had hot drinks. Oddly both these fizzled out in my 20s though I am still not very well in hot weather. I have an extreme wasp allergy and having been de-sensitized and 

Carla and Family’s Story
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