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MastAttack position on Mast Cell Activation Syndrome

In the unlikely event that it is unclear where MastAttack stands on mast cell activation syndrome:

MCAS is a serious, debilitating disease that directly causes an array of symptoms that often interfere with the daily living activities of patients who have it.

MCAS increases the risk of anaphylaxis, a potentially fatal, severe allergic reaction.

MCAS patients require careful management of their condition to stay healthy and safe. Overwhelmingly, this requires medication. There is nothing wrong with needing medical management of MCAS. You are not doing anything wrong by taking medications prescribed by a knowledgeable provider.

MCAS patients are more likely to have other disabling conditions, such as gastroparesis, Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, and various autoimmune disorders and immunodeficiencies, among others.

Patients with MCAS sometimes need an extraordinary level of nutritional intervention to prevent malnutrition, starvation, and complications thereof.

Patients with MCAS sometimes require central intravenous lines to facilitate nutrition, use of IV fluids, and IV medications.

Patients with MCAS sometimes require GI tubes to facilitate nutrition and medication use in patients who are not able to take foods and medications orally.

Patients with MCAS often live complicated, stressful lives. Their experiences do not deserve to be mocked or minimized. They should under no circumstances attempt to manage their disease on their own without medical supervision without detailed conversations with their own care teams.

Patients with MCAS often repeatedly suffer the indignity of having their very state of health questioned and belittled by providers, family members, coworkers, and the public. This is especially an issue where it concerns medically complex children as unfamiliar providers may incorrectly assume that these children are receiving unnecessary medical interventions, sometimes resulting in removing the child. All of these situations can discourage MCAS patients from seeking care and can endanger them.

The idea that MCAS patients cannot die of complications of their mast cell disease and other diagnoses is ridiculous. I know MCAS patients who have died from anaphylaxis or from the inability to receive needed therapies without anaphylaxis and shock. We are fortunate as a community that these deaths are rare, but to insinuate that they do not happen is both incorrect and disrespectful.

The recent “controversy” about whether or not MCAS can be serious and disabling is shocking and has been difficult to watch. I do not often find myself truly stunned. While many patients are fortunate to be able to live safely while managing MCAS, we all know a number of MCAS patients who are not able to achieve stability, and who require aggressive medical and surgical management to stay alive. I cannot believe I have to say this.

MCAS patients are an integral part of the mast cell community. Please support them now.