We will offer support to the mast cell disease community, their families, doctors and researchers.
We will raise awareness of Mast Cell Activation Syndrome.
We will strive for better diagnostics and treatment.
Like many charities our income has been hit by the Covid 19 lockdown. Historically our main fundraiser has been our 500 Legs Walking event, during which supporters (along with other silly legs) undertake sponsored walks for the charity. This year, this is unlikely to be possible.
To ensure the charity doesn’t lose much needed income, we are asking supporters to organise your own event interpreting the 500 legs idea for the lockdown environment. It could of course still be walks or jogs if you're up for it in family groups. However can we issue a friendly challenge to come up with creative ideas for lockdown, that would be worth a bit of sponsorship from friends and family?!
As well as runs/walks on private property, we already have a 10 year old MCAS sufferer doing 500 bounces on a trampoline, a mum working on her 1 year old to take 100 steps in the next month and another supporter hitting 50 difficult yoga positions. Whatever your legs are doing, please share your photos and videos with us - but obviously respect social distancing and Government advice regarding Covid 19.
There are many people living in the MCAS community who are desperate for support. We believe awareness, diagnosis and treatment of MCAS can be dramatically improved, but we can only achieve this on the back of whatever funds we can bring in. We need your help.
Lily is bouncing her way to 5000 whilst shielding from coronavirus.
We believe awareness, diagnosis and treatment of MCAS can be dramatically improved but we can only achieve this with your help. Sign up to become a Friend of Mast Cell Action so we can keep you up to date on our progress and how to get involved in our latest initiatives. Please click on Data Protection at the bottom of the page to see our Data Protection Information.
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Mast Cell Action is a member of the Genetic Alliance
With your help Mast Cell Action will support patients and doctors, raise awareness and promote the development of better diagnosis and treatment.
Please make a donation today and together we can make a difference for sufferers of MCAS.Make a donation
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 ( toothpaste, soap etc), she has a limited diet of 9 foods and does not tolerate the fillers and colourings in most medicines, including those which she needs to relieve the symptoms she regularly suffers.
Daily life is an enormous struggle to keep her well, she sees 5 different consultants but has no coordinated care. She has recently tested positive for elevated levels of the chemicals (mediators) released by mast cells and her doctor is confident that she is suffering from MCAS. Every aspect of Lily's 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 a life as possible for a 7 year old! Lily can have symptoms from walking past someone in the street with strong perfume on, she cannot go through the aisles in shops with strong smells (cleaning products, beauty etc), if she cools down or heats up too quickly it can make her feel really unwell. She will often be curled up on her Mum's lap instead of running around with her friends as she feels too poorly to join in. Sometimes she is in so much pain that she will sit crying and asking why this is happening to her.
Some days are relatively normal (with careful management of diet etc) other days she cannot function normally at all. She is waiting for compounded medictaions, free from additives, which will hopefully better manage her symptoms.
Suspected MCAS patients 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 their symptoms or simply no diagnosis at all.