Story
Please help us raise awareness and funds for Mast Cell Action. While we can’t participate in the annual 500 legs charity walk due to social distancing this year - We are over the moon that Blake is well enough to take part in the event this year (Woo hoo!) and have decided as a family to challenge ourselves to exercise 500mins in July. We will walk, run, cycle, roller skate & cartwheel throughout July!
Blake is 5 and has suffered from symptoms of Mast Cell Activation Syndrome (MCAS) for most of his life. He wasn’t born with this but started getting sick around 17months old and his symptoms have gradually got worse. He suffers with abdominal pain, nausea, vomitting, multiple food intolerances, spots/rashes, fevers and flushing.
He currently has only 11 safe foods that he can tolerate and cannot eat any dairy, soya, processed foods, shellfish, food colourings, some fruits & vegetables and sweets & chocolate. He also has to avoid other foods that are high in histamine (raisins, strawberry, citrus, avocado, garlic, onion etc) and we are always finding more foods. If he eats any of these foods he will be violently sick for hours on end and then spend a few days recovering.
Blake takes daily anti histamines to help keep his reactions under control, however it’s still not a foolproof method as he does still get sick and his diet has to be meticulously planned and meals prepared fresh (no Leftovers/ precooked food). The daily management of this is difficult and completely dominates our lives on a practical level , as well as emotionally as we never know when or what he might react to. As a parent it’s also a great concern that his limited diet (that helps to control his symptoms) isn’t providing enough nutrition.
As Blakes Mum, I have tirelessly researched his symptoms and self managed his diet, however like the majority of suffers he currently has no diagnosis for MCAS. Please share & donate to help raise awareness for this rare condition and improve diagnosis for those suffering.
Thank you! Sabrina, Kirk, Daisy & Blake xxxx
Mast cells are part of the body’s immune response cells, offering protection against allergens by releasing their chemicals including histamine. With MCAS these cells are hyper-active, they inappropriately & excessively release their inflammatory chemicals into the body in response to often harmless substances or even environmental exposures. These chemicals subsequently cause chronic, often debilitating, symptoms across multiple body systems & even anaphylaxis.
Only recognised by the World Health Organisation in 2016 MCAS is a poorly understood & under-recognised condition amongst the medical community.
Mast Cell Action’s vision is to provide support, raise awareness and help advance the diagnosis and treatment of MCAS. With your help we aim to ensure that doctors across the UK have a greater awareness of this debilitating illness and will work to promote the development of more accurate tests leading to much quicker diagnosis and treatment. We promise that every penny we raise will go towards achieving our aims. Our mission:
- To lobby for universal awareness, diagnosis and treatment of MCAS.
- To provide support for MCAS patients & their families
- To support doctors & researchers with an interest in MCAS
- To persuade the medical community that, by recognising MCAS there will be a huge opportunity for the much more effective use of resources within the medical system.
- To bring the MCAS patient community together & create a cohesive voice.
Mast Cell action relies entirely on the generosity of people like you. Thank you for support.