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Brief Summary of Mast Cell Activation Disease (MCAD) and Mast Cell Activation Syndrome (MCAS)

Countrygirl

Senior Member
Messages
5,399
Location
UK
http://www.investinme.org/IIMER-Newslet-1709-03.shtml

Brief Summary of Mast Cell Activation Disease (MCAD) and Mast Cell Activation Syndrome (MCAS)


Background

Mast Cell Activation Disease (or Disorder) is the generic term for two main categories: Mast Cell Activation Syndrome and systemic mastocytosis (SM); MCAS features inappropriate mast cell activation, with mediator production and release, whereas mastocytosis features mast cell proliferation where mast cells accumulate in potentially every organ system but in particular, the gastrointestinal tract, the cardiovascular and the nervous systems.

The widespread prevalence of mast cell disease is the opposite of what the medical profession has been teaching medical students: MCAS is more prevalent than mastocytosis and whilst mastocytosis is indeed rare, research suggests that 14 -19% of the general population is affected by MCAS.

Mast cell disease carries an increased risk of malignancy, especially lymphoma and leukaemia: mastocytosis is classified by the WHO under myeloid neoplasms and life span may be compromised.

Medical education on MCAS is a is woefully lacking: it is known as an “orphan” disease, which means that many doctors may not even be aware of it and the vast majority of physicians have no training in how to manage it.

Afrin refers to it as “this lonely area of biomedical science”; he states that 99% of the medical profession still think mast cell disease is only the rare cancer-like disease of too many mast cells (mastocytosis) that is impossible to treat, so to ameliorate this lack of professional awareness of MCAS, Afrin also aims to inform patients themselves about what is a very serious and increasingly prevalent disease that causes severe and usually life-long suffering.

The modern epidemic of chronic inflammatory diseases
Afrin observes that the modern epidemics of chronic inflammatory diseases are increasingly being found to manifest inappropriate mast cell activation and he describes mast cell disease as “a multi-headed Hydra”: given how it has the potential to impact every system in the body and given its common clinical presentation with multi-system inflammation, Afrin queries whether MCAS is the root cause of branch disorders such as dysautonomia, irritable bowel syndrome, fibromyalgia; interstitial cystitis, lupus, mixed connective tissue disease, multiple sclerosis, multiple chemical sensitivity, POTS and Sjogren’s disease, amongst others, and it has also been suggested that there may be an association between ME/CFS and mast cell activation disorder (1), all of which have overlapping features.


 

Londinium

Senior Member
Messages
178
he states that 99% of the medical profession still think mast cell disease is only the rare cancer-like disease of too many mast cells (mastocytosis) that is impossible to treat

Interesting that it claims mastocytosis is impossible to treat. My half-brother has mastocytosis (part of my long family history of autoimmune disorders) and has been treated pretty successfully with Ranitidine. I realise that this treatment doesn't work for everyone, but I'm not sure that 'impossible to treat' (i.e. don't bother trying) is correct.