Monday, July 20th, 2020

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 


Sunday, March 29th, 2020

The COVID-19 Outbreak Advice for UK patients with Mast Cell Diseases from UK Mast Cell Disease Doctors March 27, 2020

There is much we don’t know about how COVID-19 might affect mast cell disease patients. We have heard now from a small number of people with a mast cell disease who also believe they have had COVID-19 (though no confirmed cases because testing is now only being done in hospital and none has required hospitalisation) 


Wednesday, December 4th, 2019

Ketotifen Update (4th December 2019)

Ketotifen Tablets(1mg) may be available through four companies that have permission to import unlicensed medications into the UK. Those companies are Mawdsley’s, Waymade PLC, Alium Medical, and Target Healthcare. Your pharmacist or hospital can contact those companies directly to find out which products they can secure. As soon as we have more information about the 


Sunday, October 20th, 2019

Ranitidine Recalls?

Many people with mast cell diseases will have been prescribed the H2 blocker, Ranitidine.  You may have seen that there are concerns about whether some ranitidine products contain a chemical called NDMA. NDMA has been shown to cause health problems in laboratory rats who have been given NDMA in large doses.  For this reasons, some 


Sunday, October 20th, 2019

Cutting Out Chocolate for Charity!

Helen Stevens and her daughter Ruby (age 9) quit their favourite sweet treat, chocolate, for a whole month! The family wanted to support their youngest member, Florence, who has Mastocytosis. When Florence was first diagnosed, Helen found that our website offered some much-needed clarity on the condition. She says that she now uses our information 


Wednesday, November 21st, 2018

Your donations DOUBLED on Giving Tuesday, November 27, 2018

PayPal Giving Fund is doubling donations to The UK Mastocytosis Support Group on Giving Tuesday, November 27, 2018. Your donations help support medical research, help us provide support to patients through events like our annual conference, and helps us educate doctors and nurses about mast cell diseases.  Please give generously! If giving is part of 


Friday, October 19th, 2018

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 


Friday, October 19th, 2018

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 


Friday, October 19th, 2018

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 


Friday, October 19th, 2018

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