Login   
UK Masto - Support, Advocacy, Research

News

Conference and AGM 16 January, 2021
We are holding our 2020 Annual General Meeting and Conference virtually on Saturday 16th January 2021, beginning at 10 am. Our conference featured speaker will be: Dr Qasim Aziz, a gastroenterologist who will be speaker about GI symptoms in all forms of mast cell disease (Mastocytosis, MCAS and HaTS).  Our survey this summer identified GI 

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  

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 

Max’s Story
I am 49 years old and was diagnosed with Mastocytosis at the age of 16. I have extensive UP, covering most of my body except my face and I have some systemic symptoms – like enlarged liver and spleen. The only adverse side-effects I have is that I do have reactions to anything alcoholic (although 

Sheila’s Story
History of masto and me: Odd pink freckles appeared on my thighs in my early thirties, no other symptoms. In my late forties I mentioned it to my GP as they had multiplied significantly. By now I was also getting hives/nettle rash when stressed (I had quite a stressy job). He referred me to the 

Lorna’s Story
I was initially diagnosed with UP [urticaria pigmentosa] in 1987 at the age of 42. We had been on a hot holiday to Greece and I had rashes on my legs that did not disappear. My GP referred me to a dermatologist, who gave the diagnosis of UP after a biopsy of one of the 

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 / Coronavirus

For information please click here.



AGM 2020
Click here for details.


 

BACK TO TOP