Story
Mast Cell Action has been set up to fill the vacuum of support for sufferers from Mast Cell Activation Syndrome, pushing for awareness, diagnosis and treatment of the disease. It is little understood in this country and so bad is the situation that it can take up to 5 years to get a diagnosis. Members of our support groups now run into the thousands and more are joining every day.
Mast cells are a critical component of the immune system that release chemicals to help combat foreign bodies, infection and injury. In a person with MCAS these same chemicals are inappropriately triggered and released, and have a negative effect on the body. Suspected MCAS patients often suffer a wide range of symptoms and struggle to be believed and get access to treatment. They often have a diagnosis that does not explain the full range of the simple symptoms. A fuller description can be found on our website: www.mastcellaction.org
The story of 11 year old Lily illustrates the nature of the illness more graphically. Lily is 11 and has suffered chronic multisystem symptoms since birth. Her symptoms cycle includes abdominal pain, vomiting, bloody stools, itching and burning skin, rashes, fevers, cystitis, fatigue, headaches, throat swelling and tinnitus. They are triggered by foods, medications, temperature changes, emotions, strong scents and chemicals, friction and body care products such as toothpaste and soap. She has a limited diet of nine foods and does not tolerate the fillers and colourings in most medicines, including those which she needs to relieve the symptoms she regularly suffers. Every aspect of Lilys life has to be thought through and planned from food to potential triggers everywhere she goes, and her parents do everything possible to balance avoiding triggers with living as normal life as possible for an 11-year-old. The lack of real understanding in the medical system means that she sees five different consultants but has no coordinated care.
We want to improve understanding and treatment for children like Lily
MCA has no external or institutional funding and is entirely dependent on donations to further its support for patients, and its efforts to create awareness and provide education regarding the disease.
Put Your Best Foot Forward is our annual fundraiser for which we invite all our supporters to undertake a sponsored event. The idea is to come up with creative ways to fundraise and have lots of fun at the same time! You might plan a walk, adding to the fun by also bringing along as many other entertaining legs as possible:- dogs legs, inflatable legs, costumes with legs - the more (and more entertaining) the merrier.
This year, as we emerge from Lockdown, we are asking people to put their best foot forward in any creative way they can think of: jumps on a trampoline, ascents of the stairs, making cakes for charity, painting the school fence - any achievement can inspire sponsorship!
Please give as generously as you can to our cause, to enable us to carry on doing what we do! Thank you.