Mast Cell Awareness Day

There are moments that change your life forever, though you rarely recognize them at the time. For me, it started with strange symptoms that no one could explain, reactions that seemed to come out of nowhere, and a body that felt like it was turning against me. What I didn’t know then was that I was beginning a journey with a condition called Mast Cell Activation Syndrome, something I had never even heard of, but that now touches every part of my life.

Five years ago, I had never even heard of Mast Cell Activation Syndrome, also known as MCAS. Now it affects nearly every part of my life.

So what exactly is MCAS? To understand it, you first have to start with the basics: mast cells.

Mast cells are an important part of your immune system. They help protect your body from threats like infections and allergens by releasing substances called mast cell mediators. There are hundreds of these mediators, but the most well-known is histamine. These mediators help regulate inflammation and immune responses throughout the body.

In Mast Cell Activation Syndrome, these mast cells become overly reactive. They release mediators inappropriately or excessively, even when there is no real threat. When that happens, it can cause symptoms across nearly every organ system, including the skin, gastrointestinal tract, heart, and lungs.

For many people, MCAS symptoms are chronic and miserable but not immediately dangerous. However, in severe cases, MCAS can cause life-threatening anaphylaxis. Unlike traditional allergic reactions, MCAS-related anaphylaxis can occur without a clear trigger, essentially making patients feel allergic to life.

Five years ago, I did not even know MCAS existed. Today, it shapes nearly every decision I make.

So what does a diagnosis of MCAS mean? It is different for everyone, but for me, it means:

1. Never knowing when mild symptoms might suddenly become life-threatening.

2. Living in and out of the ICU.

3. Reading every food label carefully and still worrying that my body might develop a new trigger.

4. Becoming an expert on my own disease because many healthcare providers are not familiar with it.

5. Having to advocate for myself constantly when doctors do not believe me or understand my condition.

6. Hearing specialists say, “Your case is too complicated,” and refusing to take me on.

7. Knowing that after the third EpiPen there is a good chance I will be spending a week in the ICU as my body continues to react.

8. Remembering the trauma of intubations, EMS calls, and the terrifying moment when your blood pressure drops and your airway begins to close.

9. Living a mostly isolated life because something as simple as perfume or cleaning products could trigger a severe reaction.

10. Hoping for remission even though there are still so many unknowns and no guaranteed cure.

11. Learning to find beauty in the everyday moments because you come to see how fragile and precious life really is.

Life with MCAS is incredibly hard. There is still so much we do not understand about this complex disease, and much more research is needed.

But even in the middle of the uncertainty, I can see God’s faithful hand at work. He has carried me through moments I didn’t think I could survive and surrounded me with reminders of grace in the middle of pain. On the hardest days, I hold on to the truth that He is still good, still present, and still writing my story with purpose.

How can you help?

Take time to learn about Mast Cell Activation Syndrome and share what you learn. The more awareness and understanding we build, the better the chances for research, treatment, and hope for those living with it.