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.
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.
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Mast Cell Action is a member of the Genetic Alliance