What are mast cell disorders?
Everyone has mast cells throughout their body. When a person comes into contact with a chemical or substance to which they may react, their mast cells are activated. They degranulate and give off histamine and other chemicals, called mediators. The histamine and other chemicals pumped into their system by the degranulating mast cells cause the person to exhibit the symptoms we typically associate with an allergic reaction—sneezing, watery eyes, rashes, hives, itching, tongue swelling, difficulty breathing, runny nose, skin flushing, and more.
Mast cell disease(s) (MCD) is the term being used more frequently by many mast cell specialists in the U.S. and internationally for all mast cell diseases and it includes every person suffering from any type of mast cell disease.
Mast cell activation disease(s) (MCAD) is the term that is also used by many mast cell specialists in the U.S. and internationally that specifically refers to and highlights the activation aspect of many non-mastocytosis mast cell activation issues and disorders.
In a mast cell/mast cell activation related disorder, something has gone wrong with the mast cells. There may be too many of them, they could be irregularly shaped, or they could be degranulating—as in mast cell activation syndrome—and be over-active for unknown reasons. A person with a mast cell/mast cell activation disorder may experience severe and life-threatening reactions after exposure to even very small amounts of a chemical or substance. Individuals with mast cell activation related disorders need to avoid exposures to the chemicals and the triggers to which they react.
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I’ve heard there’s a connection between mast cells and COVID—is this true?
Current research has shown that the COVID-19 pathology of infection is linked to an over-response of immune cells that include mast cells. Recent studies have also shown that mast cells are involved in the pathogenesis—the origination and development—of COVID-19: elevated numbers of mast cells as well as significantly higher levels of specific chemicals that indicates systemic mast cell activation in patients with COVID-19 who were studied (click here, here, and here to read the research articles.)
Current research has also shown mast cell activation associated with long-COVID/post-COVID syndrome (see here) and that in long-COVID, there can be multiple ways leading to and/or increasing mast cell activation “and the occurrence of MCAS in patients with long COVID” (see here). Research has shown that people with long-COVID who were studied “have virtually identical mast cell activation symptoms and severity” as previously diagnosed MCAS individuals without long-COVID (see here.)
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What does this mean?
There are doctors (see J. Tsafrir, MD) who are currently urging that healthcare professionals (medical doctors, psychotherapists, psychologists, psychiatrists, social workers, nurses) be aware of Mast Cell Activation Syndrome (MCAS) and learn the presenting symptoms of mast cell activation related disorders. Recognizing and understanding mast cell activation and mast cell activation related disorders may suggest routes to effective therapy (click here to read article.)
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What is long COVID?
According to the World Health Organization, long COVID refers to the array of long-term symptoms that some people experience after having COVID. Research has shown that as many as 50% of people who have had COVID report having long COVID symptoms (see here).
According to a recent Lancet article, an estimated 65 million people worldwide are struggling with long COVID and that it affects people of all ages, including children, with most cases occurring in people whose experience of COVID-19 was mild and not severe. People frequently experience fatigue, shortness of breath, cognitive dysfunction that can impair their ability to perform daily activities for several months or years. The article goes on to estimate that one in ten people who develop long COVID stop working, which results in widespread global harm to people’s health, wellbeing, and livelihoods causing extensive economic losses.
Symptoms include: fatigue, breathlessness, and cognitive dysfunctions such as confusion, forgetfulness, lack of mental focus and clarity (see WHO, 2022.) Symptoms can persist from when a person first gets COVID, or can develop after a person recovers from COVID, or can come and go or relapse over time and can affect a person’s ability to work and to perform activities of daily living (see here, here, and here)
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Are mast cell disorders the same as chemical sensitivities or MCS?
Mast Cell Activation Syndrome (MCAS) and systemic mast cell disorder are medical diagnoses. Multiple Chemical Sensitivity (MCS) is not a medical diagnosis (see here). Mast cell activation related disorders, such as MCAS, have symptoms that can include being sensitive to chemicals and substances. The term MCS and Multiple Chemical Sensitivity is referring to symptoms people experience but is not a medical diagnosis. Current research (see T.C. Theoharides, MD, here and here) has shown that the reactions to triggers individuals experience, including being sensitive to multiple chemicals, have a basis in mast cell function and mast cell degranulation.
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What do I do?
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If you feel that you may have a mast cell related disorder, please contact a physician to receive medical help. The information presented here is not medical advice and is in no way a substitute for receiving medical advice and treatment from a doctor.