Mast Cell Activation Disorder is the most complicated of the secondary conditions to EDS. There is very little information about MCAD simply because there is so little research and understanding about the condition, even within the medical community.
‘Mast Cell Action’ – the leading UK charity for Mast Cell/Allergic Disorders – defines the illness as below:
Mast cells, a type of blood cell, play an important role in the body’s immune system. They reside in all body tissues and form part of the body’s initial defence system. Mast cells react to foreign bodies and injury by releasing a variety of potent chemical mediators, such as histamine, when activated. In a healthy person these chemicals will act beneficially to protect and heal the body, but in a person with MCAS these same chemicals are inappropriately triggered and released and have a negative effect on the body. Amongst the triggers are a variety of different foods, exercise, chemicals, fragrances and stress. Many sufferers struggle to identify their triggers and continue to discover new triggers for many years after diagnosis.https://www.mastcellaction.org/about-mcas
MCAD ia an immunological condition: which (ike a lot of the other conditions of a similar nature), works on a spectrum system. Mast cells are a type of white blood cell. White blood cells have fight against any ‘threat’ in the body such as infection, trauma, wounds etc.
Mast cells contain Histamine, amongst lots of other chemicals, to fight against allergens. In patients with MCAD, these Mast Cells are over-active and are released unnecessarily. The release can be triggered by anything from stress, to temperature change, emotion, allergens and many other things, meaning that there is a constant risk of allergic symptoms.
As you can read from the cited webpage (above), MCAS has only been medically identified since 2007 – just 5 years prior to my first attack; a concept that I’m still trying (and struggling) to get my head around, even today!
Mild cases of MCAD present with symptoms such as rashes, flushing, allergies (particularly to medication), and some gut involvement. On the most severe end are symptoms such as Anaphylaxis/Life threatening swellings (often requiring intubation and admission to Intensive Care), inability to tolerate food, multiple changing allergies, pain and much more. It was due to this condition that I required a tracheostomy, and it still saves my life on a regular basis.
MCAD is virtually the same as Mastocytosis – a condition with a lot more research and understanding. Both conditions present with the same symptoms and require the same treatment (the only difference being the blood tryptase level being consistently high in Mastocytosis, but normal in MCAD). The treatment starts with antihistamines but in some cases need mast cell stabilisers and in the worst cases is treated with chemotherapy or post-transplant anti-rejection drugs, all of which I have tried and suffered the side effects of, in a bid to improve the overall condition (unfortunately with only short term success, if at all/.
Existence of a subset of mast cell disease patients who experience episodes of mast cell activation without detectable evidence of a proliferative mast cell disease was postulated over 20 years ago.19, 20Over the last two decades, with development of improved methodology for identification of abnormal mast cells,21-24 it became apparent that there were patients who exhibited symptoms of mast wcell mediator release who did not fulfill the criteria for SM.25, 26 Thus began the evolution of discussions about other forms of mast cellAdiseases, both clonal and nonclonal, which became known as Mast Cell Activation Syndromes (MCAS).6, 27, 28https://tmsforacure.org/overview/
There are many opportunities in life where uniqueness is a positive and something that’s encouraged; the majority of situations in fact. Being unique in the medical world, however, isn’t always advantageous – I would much rather be common, well-known and easy in that respect!..