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Mast cell activation syndrome


Mast cell what? Don’t worry, we don’t blame you if you haven’t heard of it! First, let’s talk mast cells. Mast cells are a type of immune cell that originate in the bone marrow and are found in most tissues. They play a role in both health and disease, and are most commonly known for their role in atopic disorders (aka allergies) and anaphylaxis. When they’re functioning normally, mast cells release chemicals that help protect the body—they’re like first responders for your immune system. But when they’re not properly regulated, mast cells have been linked to several chronic allergic/inflammatory disorders, autoimmune diseases, and cancers. If you have mast cell activation syndrome (MCAS), your mast cells overreact and release chemicals when they shouldn’t. Often, they treat food, fragrances, temperature, and even stress as something to “defend against.” Depending on which chemical the mast cells release, you can experience a whole range of symptoms, including hives, diarrhea, shortness of breath, fatigue, brain fog, congestion, lightheadedness, and much more. MCAS may even cause anaphylaxis, a medical emergency. And it may pop up in people who have Ehlers Danlos Syndrome (EDS), which is a connective tissue disorder, or Postural Orthostatic Tachycardia Syndrome (POTS). MCAS is difficult to diagnose and treatment response varies. If you have MCAS, try to avoid substances and environments that may provoke your symptoms. If a severe anaphylactic reaction occurs, call 911 right away—you’ll need to be treated emergently with epinephrine. Antihistamines, H2 blockers, mast cell stabilizers, and steroids are also used to help treat the symptoms. Your mast cells are just trying to do their job and keep you safe, but as is often the case, the immune system can take it too far!

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Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity

In 2008 Dr. Afrin started coming to understand that a newly recognized type of mast cell disease, now called mast cell activation syndrome (MCAS), was the underlying diagnosis in many patients he was seeing who were each suffering large assortments -- quite different from one patient to the next -- of chronic multisystem inflammatory illnesses of unclear cause. Dr. Afrin soon gained experience that MCAS is far more prevalent than the only mast cell disease previously known to medicine (the rare disease of mastocytosis) and that most MCAS patients, once accurately diagnosed, can eventually find significantly helpful medications targeted at the disease. The frequency and magnitude of the improvements Dr. Afrin has seen -- even the relief that comes from finally having a unifying diagnosis other than psychosomatism -- have spurred him to focus in this area, not only tending to the needs of his patients but also pursuing research to advance our understanding of the disease and helping to educate other professionals who in turn can help even more of the many people who have long been suffering not only the symptoms of the disease but also the natural concern of not understanding why one would be so "unlucky" to have acquired so many medical problems. As it turns out, such patients are not so unlucky and truly have just one root issue (and a very common one at that), which has the biological capability to develop, directly or indirectly, into most or all of their previously diagnosed problems. There is a great deal yet to learn about this, but even with just the present very limited understanding, the opportunity to diagnose and help patients with MCAS seems to be enormous and Dr. Afrin felt a description of the disease, written for the general public, might help lead some MCAS patients on a journey to diagnosis and improvement sooner rather than later. Dr. Afrin hopes this book will help people who might have, or do have, MCAS. A portion of the proceeds of purchases of this book will go to support research and education in this area.

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