Thursday, October 18th, 2018

Janette and daughter Helen’s Story

Shortly after Helen was born we noticed spots on her bottom. These later spread to the whole of her torso, front and back, some down her legs and up to her neck. On a couple of occasions, mainly in shops when she got too hot, the spots would become red and angry-looking. I took her 

Thursday, October 18th, 2018

Hayley and son Mark’s Story

Our son Mark has Cutaneous Mastocytosis. I guess he is pretty rare as only about one in 400,000 – 500,000 in the UK has this condition. Sounds quite cool but actually it kinda’ sucks as it took many months and wrong diagnoses to figure out why our son is so “spotty” and what caused his 

Thursday, October 18th, 2018

Danielle and daughter Marina’s story

Marina my daughter has Diffuse Cutaneous Mastocytosis (DCM) and she is now 26 months old. We had a long battle to try and get her diagnosed; she was finally diagnosed at 15 months old. At the age of 9 months she would crawl around and with any knock or bang she would blister. She gets 

Thursday, October 18th, 2018

Carla and Family’s Story

I have two boys with mastocytosis, Alex 12 years old has Systemic Mastocytosis and was diagnosed at the age of two. He has an enlarged liver and spleen and a low platelet count. By the age of three and a half he was also diagnosed with an Immune Deficiency with a sub group IgA and 

Thursday, October 18th, 2018

Alana and son Jay’s story

  Jay is 22 months old and was diagnosed with Urticaria Pigmentosa when he was about 13 months old, although he has suffered with it from when he was a few days old. He has a rash all over his torso and legs most of the time and suffers from stomach cramps and loose stools. 

Thursday, October 18th, 2018

Adele and Mandy’s story

Mandy first showed her marks at 8 weeks old and they steadily progressed from there; I had been told by many GPs that it was eczema. At 8 months old I asked for her to be referred and for the next four months she had tests for everything. No one knew what it was but 

Wednesday, October 17th, 2018

UK Drug Trials for Systemic Mastocytosis Opening/Expanding

Trials for two new medications for people with systemic mastocytosis are recruiting patients in the UK.   Blueprint Medicines is expanding its Phase I trial of Avapritinib in adults with Advanced Systemic Mastocytosis (Aggressive SM, SM with an Associated Haematologic Disease and Mast Cell Leukemia) and is launching a new Phase I trial of Avapritinib 

Wednesday, September 19th, 2018

Ketotifen Elixir (Liquid) Ordering Information

Ketotifen Elixir is available, but some patients may still be having trouble obtaining it. Because of a shortage of the original form of Ketotifen Elixir (liquid), CD Pharma have received permission to sell an alternate form of the liquid originally packaged for the market in Poland.  The original liquid was strawberry flavoured while the “temporary” 

Monday, June 25th, 2018

It’s a Bronze Medal for Immy!

Our young member, Imogen Sharp, won a bronze medal at the WUKF Karate World Championships in Dundee, Scotland in June 2018.    Immy competed for England in the Under-7s category and received her medal in the Kumite (sparring) competition.  Immy trains five days a week at the IESKA Karate Club in Stubbington under Sensei Martyn Styler.  Her 

Monday, June 25th, 2018

Hear Dr Theoharides Speak on Mast Cells, Mastocytosis and mast Cell Activation Syndrome

Dr Theoharis Theoharides, a leading mast cell researcher, was the guest speaker at our AGM in December 2017.   His presentation about mast cells and their role in mast cell diseases was fascinating– and complex so it’s great to be able to watch it more than once!