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UK Masto - Support, Advocacy, Research

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Book NOW! for our Conference and AGM, January 22nd 2022
We are holding our 2021 Annual General Meeting and Conference virtually via Zoom on Saturday 22th, January 2022. Click here to register. We are excited to bring you outstanding speakers including: Dr Sarah Glover, Clinician and Researcher on Hereditary Alpha Tryptasaemia Dr Bethan Myers, Haematologist Dr Deepti Radia, Haematologist Dr Andrew Whyte, Allergist There will 

Clinician Virtual Training Course, rescheduled for March 18, 2022
The free virtual training course previously scheduled for January 21, 2022 has been moved to Friday March 18, 2022 due to COVID-related staffing policies currently in place.  Apologies for the change!  We hope that means that we will see all those who have already registered and new people as well!   If you are already 

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 

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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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 

Mandy’s Story
About three years ago, when I was 47, I noticed what seemed to be big brown freckles on the backs of my right forearm. They continued to appear, now on both arms, and a friend eventually said that it looked like a rash, and I should go to the doctor. It didn’t look like a 

Kelly and daughter Amber’s Story
I have 2 children one with mastocytosis, the cutaneous version. She is 18 months old and was diagnosed when she was about 6/7 months. I will be requesting Epipens, although Amber hasn’t shown any anaphylactic tendency just knowing it is possible I want to be prepared, this was all news to us! Also she has 

Marcia and baby Samantha’s Story
My name is Marcia and after a wonderful (first) pregnancy I had Samantha by emergency C section. I remember when they lifted her out of my tummy I looked at her hands. I noticed what looked like a heat lump on the middle knuckle on her right hand but I didn’t think anything else about 

Claire’s Story
I have had Urticaria Pigmentosa (UP), a form of mastocytosis, since in my late twenties (I am now 65), which my consultant assures me is cutaneous, not systemic. However, the spots each year get gradually worse, especially on the outer thighs, where they now look almost like strawberry marks as the spots are joining together. 


COVID-19 Vaccine Statement and Survey

For information please click here.



 

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