Mast Cell Disease Toolkit

Published: January 28, 2025

Revised: February 4th, 2025

a woman with abdominal pain holds her stomach

Do you often get a skin rash after you are exposed to an allergen or irritant? Do you also have breathing problems and/or stomach issues? A sudden or unexplained flushing sensation? Rapid pulse or low blood pressure? Bone or muscle pain? You may want to learn about mast cell diseases. While rare, these diseases are increasingly recognized by doctors.

Allergy & Asthma Network has created the Mast Cell Disease Toolkit. This new guide helps people better understand mast cell diseases (MCDs). While these diseases are rare, they can make life challenging for people who have them, and can cause other health problems too.

When mast cells work properly, they help protect your body from intruders like allergens or a virus. In the process of fighting back, the body releases histamine. This can cause a host of symptoms such as allergies, breathing difficulty, stomach problems and eczema or urticaria.

But in some people, mast cells are overactive or they are released at the wrong time. This is a mast cell disease and symptoms tend to be more severe. It can lead to anaphylaxis, a life-threatening allergic reaction. The two most common types of mast cell diseases are mastocytosis and mast cell activation syndrome (MCAS).

This guide is here to help whether you just found out you have a mast cell disease, you take care of someone who has it, or you just want to learn more. Together, we can help more people understand these diseases, find better ways to handle them, and support each other.

In this toolkit, you’ll learn about…

Understanding Mast Cell Diseases

Learn about mast cell diseasesand find out the signs hat suggest you may have one. Get an overview of the symptoms, such as skin rashes, stomach pain, breathing problems, or severe allergic reactions. We’ll also tell you how doctors figure out of you have a mast cell disease and why it’s important to see specialists who are experts in the field.

Treatment Options

Find out about ways to feel better if you have a mast cell disease. A host of treatments are available, including medications (called tyrosine kinase inhibitors) that can help your mast cells work better. We’ll also tell you about lifestyle changes you can make in your daily life and what to avoid that might make you feel worse.

Types of Mast Cell Diseases

Learn the different kinds of mast cell diseases. The two most common are mastocytosis and mast cell activation syndrome (MCAS). Hereditary alpha tryptasemia (HαT)is a genetic trait that is related to mast cell disease. Each of these condition is different and requires a specific treatment plan.

Mast Cell Disease in Skin of Color

Skin symptoms such as a rash or skin lesions are common in certain mast cell diseases. It can be harder for doctors to spot these symptoms in people with darker skin. The same symptoms that look red on light skin might look brown, purple, tan, or gray on darker skin. Learn more about these differences in mast cell disease in skin of color.

Living with Mast Cell Disease

What is it like to live with a mast cell disease?Why is it important to identify and know your symptom triggers? Get answers on how to manage mast cell disease so you can lead a full and active life. Learn tips like what foods might be safe for you, how to feel less stressed, and why it helps to have people who support you.

Mental Health and Mast Cell Disorders

You may need help dealing with stress when you first learn you have mast cell disease. Or you may need help managing the disease. While there’s no cure for mast cell disease, you can learn to handle your symptoms and feel better. Learn practical strategies like wearing a medical alert bracelet, how to manage stress, and why staying active and eating well can support your mental health.

Mast Cell Disease Podcast Series

Our Allergy, Asthma and Immunology Innovations podcast recently hosted an 8-part series focusing on mast cell diseases. Episodes focused on symptoms, diagnosis and treatment options. Hosts Payel Gupta, MD and Kortney Kwong Hing spoke with medical experts and researchers in the mast cell disease specialty. You can watch or download the episodes for listening anytime and anywhere.

Ask the Allergist Video

Your symptoms might suggest you have an allergy. But what to do if allergy testing is inconclusive? In this case, your allergist may evaluate you for a mast cell disease. We chatted with Leena Padhye, MD about signs and symptoms to watch for that suggest you may have a mast cell disease. Watch our video short: Do I Have a Mast Cell Disease?

MCD Glossary

Learn the various terms and definitions used for mast cell diseases.