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Mast Cell Activation

Blood Cancers & Disorders | Last Active: May 27 8:45am | Replies (122)

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@kanaazpereira

Hello @lookingforanswers2017,

Welcome to Connect. I can only imagine your worries, and want to reassure you that you are not alone. We're so glad that you've reached out to the Connect community for support. I'm certain that @danmlee @dolan @mjgarr @mepslissy @jools @allergynightmare @jbhmaine @lean1 will return to share their insights with you.

I'd also like to mention that Mayo Clinic physicians have a special interest in the diagnosis and treatment of systemic mastocytosis — mast cell activation syndrome. As part of their research, they have discovered several new syndromes and identified how mast cells and eosinophils play a role in a variety of diseases. You can read more about the program here: http://www.mayoclinic.org/diseases-conditions/systemic-mastocytosis/systemic-mastocytosis-care-at-mayo-clinic/ovc-20324430

Research studies have shown that many skin disorders worsen during stress and are associated with increased numbers and activation of mast cells. Here's an article that reports on depression in patients with mastocytosis: http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0026375

@lookingforanswers2017, has your doctor recommended any stress relieving approaches, for example meditation? Have you found it beneficial to change your diet?

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Replies to "Hello @lookingforanswers2017, Welcome to Connect. I can only imagine your worries, and want to reassure you..."

MCAS is not the same as the more rare mastocytosis, they are 2 different things per Dr. Afrin, Dr. Dempsey, and Dr. Maitland. The sad thing is that specialists in this mis-understood disease (MCAS) are only concierge doctors and do not take insurance, so treatment is only for the rich? When will Mayo recognize Mast Cell Activation Disease as separate than mastocytosis? MCAS is extremely disabling for many of us, with comorbid conditions like POTs and Ehlers-Danlos.