Welcome to talkMCAS

An independent science platform dedicated to mast cell research, education and advocacy for the betterment of global health.

Mast Cell Activation Syndrome, commonly known as MCAS (em-kass), is a blood disorder which remains largely unidentified worldwide in spite of being responsible for a modern epidemic of chronic illness that is impacting approximately 17% of the global population. Gaining greater insight into this commonly occurring immunological disease could provide the scientific tools needed to identify who amongst us is most vulnerable to symptomatic and severe Covid-19 episodes, as well as providing assistance to the Covid-19 long-hauler patients with persisting medical challenges. Moreover, increasing mast cell science will provide doorways to healing for many within the chronic illness community, it will allow the world to reduce vulnerability to future infectious diseases, and it will provide etiological insights into the cause of many diseases which will allow science to ensure greater safety assurances in drug development and improved patient care.

MCAS experts have published multiple papers on the suspected link between MCAS and Covid-19:

“One-fifth of Covid-19 patients suffer a severe course of Covid-19 infection; however, the specific causes remain unclear. Mast cells (MCs) are activated by SARS-CoV-2. Although only recently recognized, MC activation syndrome (MCAS), usually due to acquired MC clonality, is a chronic multisystem disorder with inflammatory and allergic themes, and an estimated prevalence of 17%.”

Citation: Afrin LB, Weinstock LB, Molderings GJ. Covid-19 hyperinflammation and post-Covid-19 illness may be rooted in mast cell activation syndrome. Int J Infect Dis. 2020;100:327-332. doi:10.1016/j.ijid.2020.09.016

“Many recent reports indicate that a considerable number of patients who received positive test results for SARS-CoV-2 are asymptomatic or have mild symptoms. However, increasing anecdotal evidence suggests that many patients who either recovered from or had mild symptoms after COVID-19 exhibit diffuse, multiorgan symptoms months after the infection prompting the Centers for Disease Control and Prevention to name it adult multisystem inflammatory syndrome. These symptoms include malaise, myalgias, chest tightness, brain fog, and other neuropsychiatric symptoms that are quite similar to those presented by patients diagnosed as having mast cell activation syndrome (MCAS).

It is, therefore, critical that MCAS (International Classification of Diseases, Tenth Revision code D89.42—idiopathic mast cell activation syndrome, not systemic mastocytosis) be suspected, evaluated, and addressed in any patient with COVID-19, who experiences chronic multiorgan symptoms. Given the abovementioned discussion, it would be prudent to consider blocking mast cells and the action of their mediators both prophylactically and symptomatically during the COVID-19 pandemic.”

Citation: Theoharides TC. Potential association of mast cells with coronavirus disease 2019. Ann Allergy Asthma Immunol. 2021;126(3):217-218. doi:10.1016/j.anai.2020.11.003

And an explanation of what MCAS is from a research paper authored by MCAS experts:

“Mast cells (MCs) are immune cells of hematopoietic origin found in all human tissues, especially at the environmental interfaces. They act as both effector and regulatory cells and play a central role in adaptive and innate immunity. Their important role in immunological as well as non-immunological processes is reflected by the large number of mediators (>200) including pre-stored ones such as histamine and tryptase as well as numerous mediators synthesized de novo in response to allergic or non-immune triggers such as chemokines and cytokines, by which MCs may influence other cells. Their evolved arrays of sensory and response mechanisms engender diverse havoc when MC dysfunction emerges. The umbrella term mast cell activation disease (MCAD) comprises the full spectrum of primary systemic MC disease, i.e., systemic mastocytosis (SM) which is further divided into several subtypes, primary MC activation syndrome (MCAS), and MC leukemia (MCL). Pathogenetically, MCAD denotes a group of polygenic MC disorders characterized by aberrant release of variable subsets of MC mediators and also an accumulation of either morphologically altered and immunohistochemically identifiable mutated MCs due to MC proliferation (SM and MCL) or morphologically ordinary MCs due to decreased apoptosis. According to recent molecular genetic findings, the subclasses and clinical subtypes of MCAD do not represent distinct disease entities but should be more accurately regarded as variable presentations of a common generic state of MC dysfunction. Due to both the widespread distribution of MCs and the great heterogeneity of aberrant mediator expression patterns, symptoms can occur in virtually all organs and tissues; hence, the clinical presentation of MCAD is very diverse, sometimes to the even-further-confounding point of presenting opposite abnormalities in different patients (or even in the same patient at different times, or in different sites in the same patient at the same time). While the prevalence of SM in Europeans ranges between 0.3 and 13 per 100,000, the prevalence of MCAS may be as high as 17 % (in Germany).”

Citation: Molderings GJ, Haenisch B, Brettner S, Homann J, Menzen M, Dumoulin FL, Panse J, Butterfield J, Afrin LB. Pharmacological treatment options for mast cell activation disease. Naunyn Schmiedebergs Arch Pharmacol. 2016 Jul;389(7):671-94. doi: 10.1007/s00210-016-1247-1. Epub 2016 Apr 30. PMID: 27132234; PMCID: PMC4903110.

Please join us in freely viewing the following educational videos which were filmed during MCAS: A Patient Experience, a Mast Cell Activation Syndrome (MCAS) public awareness event held on Sunday, October 13th, 2019 at Florida Atlantic University in Jupiter, Florida, USA.

MCAS: A Patient Experience Videos

Video 1: MCAS Patient Testimony:

Diane M. Kane was diagnosed with MCAS at Cedars-Sinai Medical Center in Los Angeles, California in July of 2017 after a 46-year battle against a mysterious multisystemic inflammatory illness. With vastly improved health due to the mast cell treatments, Diane is committed to helping others to overcome and manage what can otherwise be a profoundly debilitating and immune-compromising disease. In her first MCAS advocacy presentation, Diane shares her medical story with the hope of making the world a better place for people living with MCAS.

Video 2: MCAS Medical Expert and Keynote Speaker:

Lawrence B. Afrin, M.D. (Board Certified Hematology, Medical Oncology) teaches about Mast Cell Activation Syndrome (MCAS) in his engaging and informative lecture entitled: Mast Cell Activation Disease: Current Concepts.

Dr. Afrin earned a B.S. in Computer Science at Clemson University and an M.D. at The Medical University of South Carolina. He pursued an Internal Medicine residency, as well as Hematology and Oncology clinical and research fellowships. He went on to direct MUSC’s Hematology/Oncology Fellowship Training Program and Myeloproliferative Neoplasms Clinical Trials Program before joining the Hematology/Oncology department at the University of Michigan in 2014. Dr. Afrin is now in private practice with his partner Dr. Tania Dempsey at the AIM Center for Personalized Medicine in Purchase, NY. Dr. Dempsey founded the AIM Center with a commitment to focus on mast cell research and patient care.

With a wealth of knowledge gleaned from diagnosing and treating over 3,000 MCAS patients since 2009, Dr. Afrin’s ground-breaking 2016 MCAS book entitled Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity serves as an important resource for his fellow medical professionals as well as for many in the general public who are seeking to understand this emerging science. Serving as beacons of hope to many within the chronic illness community, Dr. Afrin and several other mast cell specialists worldwide have been the early pioneers in understanding MCAS. It is time for the world to hear these experts and to answer their calls for increased mast cell research.

Video 3: Post-lecture discussion:

Lawrence B. Afrin, M.D. and MCAS Supporter, Thomas F. Kane, discuss possible links between MCAS and Gulf War Illness, as well as MCAS and Autism. While clinical and laboratory research remain limited regarding MCAS and its many subset and/or co-morbid conditions, there has been speculation about links between MCAS and both Gulf War Illness and Autism. Dr. Afrin kindly sat down with Tom Kane to shed some light onto these specific conditions. However, it is wished to be emphasized that these are two sub-specialty areas of study with regard to MCAS and a much wider MCAS patient population exists beyond any potential connection with these particular conditions.

Thank you for your time and attention. Together, we can have victory over MCAS.

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