UK Masto - Support, Advocacy, Research


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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Christopher’s Story
I have just turned 70. Urticaria Pigmentosa hit me 29 years ago – I do feel a bit of a fraud as so far I have had no really bad effects, as far as I know. All my body – except my face – is reasonably heavily spotted. I do get tired – but cannot 

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 

Raymond’s Story
I have been diagnosed with Idiopathic Anaphylaxis (IA). It all started at the tender age of 48 when I woke in the night, head ringing, itching all over and when I looked in the mirror a face the size of a football. I uttered the famous words to my wife “I think there’s a problem”. 

Judy’s Story
Seventeen and a half years ago when I was 57 I was admitted to hospital after having five spinal fractures in less than five months and as a consequence lost five inches in height. I was diagnosed with severe osteoporosis. During my month’s stay the doctors were concerned about my spots/rash on my thighs inner 

Kirsten and daughter Maya’s Story
Maya, who has had UP [urticaria pigmentosa] since about 3 months, is now doing really well at 11, she has recently been getting better and better. As I have often said to other parents – there was an improvement in Maria’s Masto from when she was 3 – 4 but it was then very gradual, 

COVID-19 / Coronavirus

For information please click here.