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UK Masto - Support, Advocacy, Research

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MAKE YOUR VOICE HEARD!!! Surveys for patients and physicians
Systemic Mastocytosis (SM) patients and their physicians in the UK (and soon, elsewhere in Europe), please participate in this groundbreaking survey on the patient experience with all forms of SM, the burden it causes, and our unmet needs! We are excited to learn more about how patients experience life with SM– and the data can 

Findings from UKMasto Survey on COVID-19 Vaccinations in Mastocytosis Published in the Journal HemaSphere
Using a survey, we sought to capture the experience of people with mast cell diseases when having their COVID-19 vaccination, beginning in February 2021.  We understood that these patients and their doctors could be concerned about how well the vaccinations would be tolerated.  We are pleased to share a peer-reviewed letter published today in HemaSphere, 

Midostaurin to Be Funded by NHS After Campaign by UKMasto and Leukaemia Care
The UK Mastocytosis Support Group and Leukaemia Care successfully campaign for patients with Advanced Systemic Mastocytosis (AdvSM) to access new treatment The National Institute for Health and Care Excellence (NICE) have today made recommendations for midostaurin to become an NHS treatment option for advanced systemic mastocytosis (AdvSM) patients in England. Advanced SM is used to 

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 


Patients and Physicians Surveys Respond Now!

For information please click here.






COVID-19 Vaccine Statement and Survey

For information please click here.





 

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