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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.

Learn More  

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 

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 

Iris’s Story
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 

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 

Vanessa’s Story
I am on Pariet [rabeprazole sodium], Lipidor [atorvastatin] and Prozac [fluoxetine]. I carry an epipen and Clarityn. I am allergic to Zirtek [cetirizine] and also Ventolin [salbutamol]. My worse problem seems to be a reaction to perfume and of course the depression which is under control with Prozac and a year’s counselling. I can’t eat 


COVID-19 Vaccine Statement and Survey

For information please click here.



 

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