Login   
UK Masto - Support, Advocacy, Research

News

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  

Jackie’s Story
My name is Jackie. I am 39 and married with 2 children aged 15 and 12. I was diagnosed with UP when I was 20. I was told by a dermatologist that there was no cure and to expect more spots by the time I was 30. I have a lot of spots on my 

Stuart’s Story
I just turned 40 this year. I have had the spots for as long as I can remember, which isn’t very long sometimes, but have only had the other symptoms for a few months. Last year I went to my GP as I had an upset stomach nearly every day for a few months. She 

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 

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 

Paul’s Story
Paul has had type 2 diabetes since 1997. This year he was passed on to the haematologist by the thoracic specialist after a very persistent cough. After a recent bone marrow biopsy Paul was told he had systemic mastocytosis. CT scans showed his spleen was three times bigger than normal. No treatment has been suggested 


COVID-19 Vaccine Statement and Survey

For information please click here.



 

BACK TO TOP