The founders and trustees of Mast Cell Action are united in our common vision to provide support, raise awareness, and help advance the diagnosis and treatment of MCAS. Our objective is to build an organisation that gives a voice to patients, supports doctors, and informs policy-makers about this condition.
Most of us have direct experience of MCAS, either as a patient, through a family member or through a friend. Though our stories are each unique, they share the common thread of the difficulties and frustrations that accompany learning to cope with chronic illness, searching for a diagnosis, and struggling to receive treatment.
After years of IBS type symptoms that came and went and then bizarre breathing symptoms, in April 2012 I suffered a one-off event - an extreme episode of wrenching lower abdominal pain and nausea. Three months later, I started experiencing episodic sensations across the day, consisting in sensations of heat and/or movement, expansion and contraction in my abdomen. The daily episodes deteriorated until I could no longer work or participate in daily life. A neuroendocrinology professor undertook a structured investigation of my symptoms, acting as a hub, referring me to other specialists.
After every test imaginable (including tropical diseases) he started to suspect Mastocytosis. The tests came back negative but in the meantime I had become aware of MCAS. The professor said he would read all the literature on the subject he was able to find. He then diagnosed me with MCAS. Unfortunately he could find no one in the UK to help advise on treatment and optimise my medications.
Gawain spent his career in management in the energy industry.
I have a friend with MCAS, and at one point, I thought my daughter might be a sufferer. It turned out she had a high sensitivity to histamines, rather than MCAS. However exposure to the full syndrome and its effects, along with the total lack of information and support in the public domain,
convinced me that there was an urgent need to fill the vacuum.
In consequence, I joined Jennie and Gawain in setting up a charity to create awareness, bring knowledge to the medical profession and provide help and advice to sufferers.
Chris Wood spent his career in Marketing & Communications.
I am professional healthcare communicator, with 20 years experience working with pharmaceutical and biotechnology companies, the NHS, and charities and NGOs such as the WHO. I have always been passionate about ensuring that the patient voice is heard and understood, and that the needs of patients and their families are adequately supported. I recently came to understand this need much more clearly when my young daughter was diagnosed with a series of severe allergies and food intolerances. Our diagnosis came after months of painful eczema and a history of terrible colic since birth, which finally culminated in two upsetting trips to hospital due to severe reactions.
I also learned that gaining this diagnosis is not the end of the story with allergic diseases, and managing the wide range of sensitivities and symptoms has become the daily challenge. I truly believe that the spectrum of allergy-based diseases is very poorly understood, and that much more medical research, knowledge gathering, and, most importantly, receptiveness from the healthcare system is needed to make improvements. I hope that my contribution to increasing the visibility of MCAS will help to drive this forward.
Ruth Slater is a healthcare communicator with a passion for making the patient voice heard. Ruth has a young daughter with severe food allergies and allergic sensitivities.
After years of helplessly watching my daughter suffer, she was diagnosed with mast cell activation syndrome. My daughter suffered for many years with a range of debilitating and unpredictable symptoms which impact her life significantly. I want to do everything I can to support those living with MCAS and those caring for someone with MCAS.
I know that we are fortunate to have a diagnosis and a supportive medical team and hope by working to raise awareness and elevate the profile of MCAS, that others will find the support they need.
Recently, my son has also been diagnosed with MCAS, which has inspired me to continue to support the MCAS community.
Working on the wellbeing resources we are developing is a key part of my work with Mast Cell Action as I believe that these are vital in the support we are providing to the MCAS community. Part of this work led me to co-author our children's book about a chameleon who has MCAS.
Joy is Director of Operations, Engagement and Services for MCA, having previously worked for various charities, specialising in community engagement
We have an incredible team of volunteers who support a variety of functions across the charity. Every single person who supports the work we do is key in helping us to meet our charitable aims. They are invaluable in helping the charity achieve its objectives.
Mast Cell Action would like to thank Purpose.co.uk and Blinkio.co.uk for their very generous support in designing and building this website.
Mast Cell Action, PO Box 11152, NOTTINGHAM, NG12 5YZ
Registered Charity Number 1164917
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