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UK Masto - Support, Advocacy, Research

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Clinician Virtual Training Course, January 21, 2022
Medical providers, please join us for a training course in all forms of mastocytosis on the afternoon of January 21, 2022 led by Dr Deepti Radia, Guy’s at St Thomas’s Hospital. This education afternoon will help delegates to understand: * How patients present to immunologists, allergists, dermatologists and haematologists * Diagnosis and management of mastocytosis 

Ketotifen tablets back in stock- October 22, 2021
Ketotifen (Zaditen) 1mg tablets are back in stock with Alloga, the UK distributors.  While it can take time for the product to travel to the pharmacies via wholesalers, pharmacies can order directly from Alloga and be invoiced by their usual wholesalers, which may speed up the process.
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, 

Masto Family in West Sussex Featured in the News
Olivia is six and has recently been diagnosed with systemic mastocytosis after being diagnosed with cutaneous mastocytosis at the age of six months.  This weekend her aunts and her grandmother are running the Virtual London Marathon to raise money for The UK Mastocytosis Support Group.  Olivia’s mum, Charlotte Lane is a trustee of the charity 

New supply of sodium cromoglycate capsules in stock
We are very pleased to share that there are now two new licensed sodium cromoglycate products that we hope will meet all or at least much of the demand over the next several months. The Department of Health and Social Care have informed us that during the week ending 17 September, Somex Pharmaceuticals will begin 

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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Sheila’s Story
History of masto and me: Odd pink freckles appeared on my thighs in my early thirties, no other symptoms. In my late forties I mentioned it to my GP as they had multiplied significantly. By now I was also getting hives/nettle rash when stressed (I had quite a stressy job). He referred me to the 

Rowena and Lester’s Story
My son Lester (10 months) was diagnosed with CM/UP [cutaneous mastocytosis/urticaria pigmentosa] when he was 3 months old. He was born with only 2 blisters but over the weeks he developed many, many spots. He is pretty much covered from head to toe. The spots on his face are flat and less red so some 

Max’s Story
I am 49 years old and was diagnosed with Mastocytosis at the age of 16. I have extensive UP, covering most of my body except my face and I have some systemic symptoms – like enlarged liver and spleen. The only adverse side-effects I have is that I do have reactions to anything alcoholic (although 

Belinda’s Story
I am Belinda, and I have been ill throughout my life (now we have realized that it was mastocytosis but hadn’t been aggravated like now). In summer 2004 I became really ill. My year was full of stress and anxiety and very hectic. My parents had split up in the new year, I had a 

Katie’s Story
I’m 44 years old with 3 children and was diagnosed with Urticaria Pigmentosa about 10 years ago. This happened purely by coincidence whilst I was visiting a dermatologist to have a suspect mole investigated – I’d actually been suffering with this strange rash that sometimes became raised and inflamed since my late teens! I underwent 


COVID-19 Vaccine Statement and Survey

For information please click here.



 

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