March 14, 2020

There have been many questions from patients affected by mast cell disease about the new coronavirus and if there are any precautions or changes in their medical management that should be undertaken. The Mastocytosis Society, Inc. (TMS) has contacted members of our Medical Advisory Board for assistance in addressing these questions. Our physicians advise that it is still unknown why some of the coronavirus patients have no or only mild symptoms whereas others are severely ill. Because of this, it is very important that everyone follow the guidance established by the NIH, the CDC and the federal task force, while taking into account their own personal reactivities (e.g., alcohol-based products may not be tolerated by some mast cell disease patients)

Elderly patients and patients with cardiac, lung or renal disease, diabetes, and/or known immunodeficiency are at increased risk for severe symptoms as described by the World Health Organization (WHO). What we do not know is whether or not patients of any age, with any form of mast cell disease, including mastocytosis, are at increased risk. Due to this unknown risk, we are advising patients affected by mast cell disease to consider taking extra precautions as for potentially vulnerable populations, as described in the link below:

If you have any high-risk factors or are immunocompromised due to disease or medications used to treat disease, please contact your physician for further instructions.

While there is not yet complete data, it appears acute lung injury caused by SARS-CoV (note: the virus is SARS-CoV2; the disease is termed COVID-19) infection results from aggressive inflammation initiated by viral replication. This replication affects multiple cell types (including airway and alveolar epithelial cells, vascular endothelial cells, lymphocytes and macrophages) leading to cell death, and associated increased production of multiple pro-inflammatory cytokines and chemokines (which has been referred to as “cytokine storm”). It is likely mast cells are also involved, among the many other cell types affected, although mast cells can produce anti-inflammatory molecules which might have some protective effects. We are also just learning how to treat those infected with pharmacologic approaches and vaccine development is underway. If someone with mast cell disease gets infected and requires hospitalization, their doctor should be aware of their current mast cell disease medications, aware of the potential for cytokine storm, and be prepared to pivot to medicines as needed for this, mast cell related or otherwise.

If you believe you are showing signs of potential COVID -19 disease, immediately contact your physician for testing and follow the doctor’s advice, which may include keeping yourself quarantined until you know you are negative for the virus.

Additionally, here is a link to the State Department’s travel advisory, if needed.

Some additional resources that may be helpful for our community include:

FARE is working to bridge divides and share useful information through online resources and virtual fellowship.


Coronavirus (COVID-19)

March 10, 2020

Although mast cell disease patients are not at higher risk than the general population, some have co-existing conditions and/or take immunosuppressant medications that can put them in a higher risk category. Please see link below for at risk conditions and always check with your physician regarding medications and any co-morbid conditions.

Our medical advisory board recommends that mast cell disease patients follow CDC guidelines.

Also, there have been questions about whether mast cell disease patients need to wear masks in public as a precaution during this epidemic. (Please note that the following comments do not apply to anyone already using a mask for protection against environmental triggers, or upon the advice of their hematologist while on chemotherapy/cytoreductive therapy/tyrosine kinase inhibitors.) An article published in JAMA states only individuals with symptoms of respiratory infection such as coughing, sneezing and sometimes fever, health care workers and persons taking care of or in close contact with someone with a respiratory infection should wear masks.

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