News

New Magazine Issue All about Systemic Mastocytosis!

Rare Revolution Magazine have put together a terrific issue on systemic mastocytosis, featuring articles by leading UK physicians on SM and on anaphylaxis in mast cell diseases and interviews with our patients and carers, as well as articles about SM advocates from around the world. Take a look! Many thanks for Blueprint Medicines for sponsoring

Miles for Mast Cells Fundraiser!

We are well into our biggest fundraiser of the year. In the month of May we have 44 people walking, cycling, swimming for us to raise awareness and funds to support our work. To make a donation to our campaign go to Miles for Mast Cells Fundraiser

Ketotifen Tablets Temporarily Out of Stock (Elixir supplies ok)

As of January 22, 2026, the ketotifen tablets licensed in the UK and supplied via Alloga UK are out of stock. The supplier reports that stock is expected in the second half of February. We will update here if we receive a date for restocking. The elixir is in stock and there is not expected

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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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

Sylvia’s Story

I had various strange symptoms when I was young including extreme urticaria in sunlight and swelling of the lips and tingling when I had hot drinks. Oddly both these fizzled out in my 20s though I am still not very well in hot weather. I have an extreme wasp allergy and having been de-sensitized and

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

Stephanie’s Story

I am 36, married with 2 little girls aged 10 and 3. For the last 6 years I have been treated for an increasing number of ‘allergies’. It was only when I suffered an anaphylactic attack that I was referred to an allergy specialist. After numerous tests they concluded that I had what they believed

Stella’s Story

I first noticed my UP in about ‘99 – after numerous visits to the GPs I decided I would like them to refer me. I eventually saw a Dermatologist in March 2004, she biopsied me and couldn’t be certain what I had so I was then seen at the local hospital. After some discussion amongst