Tuesday, May 9th, 2023

Recall of all Emerade 300 and 500 mcg Adrenaline (Epinephrine) Pens

The manufacturer of Emerade pens has shared the news on May 9, 2023 that it is recalling all 300 mcg and 500 mcg due to a risk of malfunction.   They should be returned to the pharmacy and replaced with either an Epipen brand or Jext brand 300 mcg pen. Please see this link for 

Tuesday, April 18th, 2023

Ketotifen 1mg tablets back in stock on April 18/19 2023

Ketotifen tablets are arriving at Alloga UK today, April 17, 2023 and should be available for order by Wednesday, April 18 or Thursday April 19.  Pharmacies can order directly from Alloga UK and be billed through their preferred wholesaler, which may speed up delivery to the patient. For ordering information and regular updates on supplies 

Tuesday, November 29th, 2022

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 

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 

Friday, October 19th, 2018

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 

Friday, October 19th, 2018

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