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UK Masto - Support, Advocacy, Research

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Be aware of the signs and symptoms of mastocytosis
Mastocytosis may present as a skin condition – but patients with the disease are at increased risk of anaphylaxis, while its systemic form can be serious and, in some cases, fatal. Read more here.
COVID-19 Supermarket Letter
We know how difficult it has been for many of you to access safe foods throughout this period. We would like to invite you to join us, along with the Mast Cell Action, in contacting your local supermarket and ask for them to consider your needs during these difficult times. Please find below a downloadable 

Shielding and Exit plan
We are pleased to be able to share this document which has been created in collaboration with Mast Cell Action (https://www.mastcellaction.org) to help share what we currently know about government guidance on shielding vulnerable patients during the Covid-19 pandemic and to share suggestions and experiences to try to help make things easier during this difficult 

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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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 

Janette and daughter Helen’s Story
Shortly after Helen was born we noticed spots on her bottom. These later spread to the whole of her torso, front and back, some down her legs and up to her neck. On a couple of occasions, mainly in shops when she got too hot, the spots would become red and angry-looking. I took her 

Jessica and son Austin’s Story
My son Austin (21 months) was diagnosed with UP [urticaria pigmentosa], I noticed red/brown patches on his back from about 6 weeks old and mentioned it to my health visitor – she told me it was eczema; I then spoke to a GP and they said the same, so I left it. I then took 

Judy and son Jon’s Story
Jon is now over 18 is doing great. He did not keep well for many years and nothing seemed to make much difference. He was diagnosed with masto when he was 4 months old. His doctors started him on Gleevec [imatinib] about a year and a half ago and although there were side effects in 

Gloria’s Story
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 


COVID-19 Vaccine Statement and Survey

For information please click here.



 

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