We have a small team of people dedicated to supporting patients with MCAS and anyone who thinks they may have MCAS. We will expand this team and their resources over time in response to patients’ requests and their experiences.
If you have a MCAS diagnosis or suspect that you have MCAS and are in need of help or advice, please email us and one of the team will be able to help you.
We have a general FB support group, if you apply please check your FB messenger in box or alternatively contact us using the button below.
If you are a parent with a child with suspected MCAS get in touch to join our parents support group.
If you would like us to call you please include your telephone number.
If you are a family member we would like to help you too.Get in touch
We hope to be able to support doctors and researchers with an interest in MCAS or those that suspect they may have a patient with MCAS. We will be happy to discuss any ideas or initiatives that require support or funding.Get in touch
We have published a small brochure that explains the aims of Mast Cell Action and the needs of the MCAS community.
You can read and download it here.Download PDF
Here is a list of documents that UK patients may find helpful in understanding MCAS and practical advice for seeking a diagnosis and treatment.
Definitions, Criteria and Global Classification of Mast Cell Disorders with Special Reference to Mast Cell Activation Syndromes: A Consensus Proposal Peter Valent, Cem Akin, Michel Arock , Knut Brockow, Joseph H. Butterfield, Melody C. Carter, Mariana Castells, Luis Escribano, Karin Hartmann, Philip Lieberman, Boguslaw Nedoszytko , Alberto Orfao, Lawrence B. Schwartz, Karl Sotlar, Wolfgang R. Sperr, Massimo Triggiani, Rudolf Valenta, Hans-Peter Horny, Dean D. Metcalfe.13.02.2018
An easy to use summary of key MCAS papers, with hypertext links to the publications12.02.2018
Print a copy and discuss the tests with your doctor, note a clinical suspicion based on symptoms is key, these tests can support a diagnosis,but a positive does not prove its MCAS and a negative does not discount MCAS. Nonetheless they are very important in providing support to a diagnosis and better defining the MCAS patient community.14.08.2017
The links are from a range of sources, some are free open source documents, and others you can only read the abstracts and need to purchase them.
Cardet JC, Castells MC, Hamilton MJ. Immunology and Clinical Manifestations of Non-Clonal Mast Cell Activation Syndrome. Curr Allergy Asthma Rep. 2013;13(1):10-8.01.02.2013
Valent P, Akin C, Arock M et al. Definitions, criteria and global classification of mast cell disorders with special reference to mast cell activation syndromes: a consensus proposal. Int Arch Allergy Immunol. 2012;157(3):215-25.01.10.2011
Molderings GJ, Homann J, Brettner S et al. Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options. J Hematol Oncol. 2011 Mar 22;4:1.01.03.2011
Yousefi OS, Wilhelm T, Maschke-Neuß K, et al. The 1,4-benzodiazepine Ro5-4864 (4-chlorodiazepam) suppresses multiple pro-inflammatory mast cell effector functions. Cell Commun Signal. 2013 Feb 20;11(1):13.01.02.2013
Strider JW, Masterson CG, Durham PL. Treatment of mast cells with carbon dioxide suppresses degranulation via a novel mechanism involving repression of increased intracellular calcium levels. Allergy. 2011 Mar;66(3):341-50.01.09.2010
Molderings GJ, Haenisch B, Bogdanow M et al. Familial Occurrence of Systemic Mast Cell Activation Disease. PLoS One. 2013 Sep 30;8(9):e76241.30.09.2013
Haenisch B, Nöthen MM, Molderings GJ . Systemic mast cell activation disease: the role of molecular genetic alterations in pathogenesis, heritability and diagnostics. Immunology. 2012 Nov;137(3):197-205.01.11.2012
Molderings GJ, Meis K, Kolck UW et al. Comparative analysis of mutation of tyrosine kinase kit in mast cells from patients with systemic mast cell activation syndrome and healthy subjects. Immunogenetics. 2010 Dec;62(11-12):721-126.96.36.1990
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