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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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Sandra’s Story
I am 43 and first noticed spots on my arms about twelve years ago. These increased very gradually at first and were not recognised by a variety of GPs. I eventually asked for a referral to a dermatologist at my local hospital and was lucky enough to see someone who was able to diagnose UP 

Kelly and daughter Amber’s Story
I have 2 children one with mastocytosis, the cutaneous version. She is 18 months old and was diagnosed when she was about 6/7 months. I will be requesting Epipens, although Amber hasn’t shown any anaphylactic tendency just knowing it is possible I want to be prepared, this was all news to us! Also she has 

Alice’s story
I am a mother of 2 grown up children and was widowed in 2007. After several years with what looked like freckles increasing on my legs I started to suffer from several different unusual symptoms, the worst being excruciating pain in my feet. I would go backwards and forwards to the GP with what seemed 

Katie and daughter Lara’s Story
Lara (who is now nearly 16) had the 50 pence sized, fluid filled blisters on her head when she was just under 1 year old. We were fortunate to be referred to a hospital, where it was decided that she had Urticaria Pigmentosa and Mastocytosis and gave us two Epipens [epinephrine] and prescriptions for ketotifen 

Danielle and daughter Marina’s story
Marina my daughter has Diffuse Cutaneous Mastocytosis (DCM) and she is now 26 months old. We had a long battle to try and get her diagnosed; she was finally diagnosed at 15 months old. At the age of 9 months she would crawl around and with any knock or bang she would blister. She gets 


COVID-19 Vaccine Statement and Survey

For information please click here.



 

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