The founders and trustees of Mast Cell Action have all been impacted by MCAS in some way, whether in their personal health or in that of a family member or friend. United by the common vision to provide support, raise awareness, and help advance the diagnosis and treatment of MCAS, we felt an urgency to create an organisation to give a voice to patients, support doctors, and inform policy-makers about this condition. We will aim to concentrate initially on MCAS as we feel there is an urgent need in respect of this form of Mast Cell Activation Disorder. With growing acceptance of this condition and more doctors committed to supporting MCAS patients, we feel confident that we can make a substantial difference to the lives of MCAS sufferers. We will also welcome all those with any form of Mast Cell Activation Disorder.
We all 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.
Gawain spent his career in management in the energy industry.
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.
Chris Wood has spent his career in Marketing & Communications.
"Chris has a friend with MCAS, and at one point thought his 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 him there was an urgent need to fill the vacuum.
In consequence he 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.”
Jennie Shellard has retired from her career in film and advertising.
After a lifetime of intermittent extreme anxiety and depression together with one ‘mystery ailment’ after another, three years ago I suffered a crisis triggered by a change of medication. I became extremely unwell with a string of extremely unpleasant symptoms, uncontrollable shaking, overwhelming anxiety, pins and needles in my arms and legs, bone pain, stomach and gastrointestinal troubles amongst them. I recovered sufficiently to set off on a relentless round of doctors, each with a different speciality. It was an allergist who put me on the right track by casually mentioning mast cells and I was able to find a specialist who understood mast cell activation syndrome. Now, with the help of antihistamines, I am able to lead a pretty normal life although I have an extremely restricted diet. I feel lucky when I hear other sufferer’s absolutely tragic stories.
John Fox is a professor of Engineering Science at Oxford University; he is an expert on the use of computer technology and artificial intelligence to assist in clinical decision making and patient care.
I am a medical computer scientist with a particular interest in developing ways of improving the quality, safety and experience of patient care. After some years working in British and US universities I returned to the UK to start a Medical Research Council project on medical decision-making and subsequently spent a large part of my career running a lab at Cancer Research UK, developing new ways of assisting healthcare professionals to improve their practice with the help of artificial intelligence. Although most of our work has been in cancer we have also worked a lot in general practice and in other “mainstream” medical specialties like cardiology and endocrinology.
After meeting founders of the Charity I thought that my skills might be applicable to MCAS and other rare diseases because a large part of the challenge for improving patient care and outcomes is the lack of specialist skills among general physicians and clinicians whose primary expertise is in other specialist fields. So far I have worked with the charity on a computer tool for helping with the detection and diagnosis of MCAS and I look forward to working on future projects on advanced kinds of “care pathway” and research into the causes and treatments of the condition.
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.
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.
We also have a team of active supporters, people that want to help but cannot make a regular commitment. 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, 6 Willes Terrace, Lemington Spa CV31 1DL
Registered Charity Number 1164917
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