Well… How do you prove something that is going on in your body that even doctors struggle to explain, simply because it is not part of their literature? How do you explain something like that? Symptoms that are so bizarre that even you, who experiences this whole torment, think it sounds totally crazy and unbelievable.

 

Dr. Lawrence B. Afrin, a leading expert on mast cell activation disease (MCAD), once said, "It’s hard to imagine a disease more complex than MCAS." Having lived through it, I can attest to that.

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Throughout my MCAS journey, I faced skepticism from every corner—family, friends, and even doctors. Many MCAS patients endure similar disbelief, with some even institutionalized due to misdiagnosis. Imagine battling a multi-systemic, inflammatory disease affecting nearly every part of your body, only to be labeled as mentally ill. This narrative needs to change.

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MCAS has only recently been discovered, so both science and medicine are still catching up. I believe that a collaboration between doctors, scientists, and patients is imperative to uncovering its complexities.

As my personal contribution to the mast cell community (and all those who are affected but haven’t ever heard of mast cells), I offer my new book, Managing Mad Mast Cells in Daily Life, in which I share all the insights that have helped me understand the dynamics of this disease, and get my life back on track.

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The moment my doctors told me that I was now affected by a chronic disease, which I should just come to terms with because little could be done about it, the rebel in me instantly resolved to learn everything I could about mast cell disease and find a way to get better. I stood there like a fool, when the clerk in the bookshop told me that there wasn’t anything available on this topic. Consequently, I spent the next several years in research, conferring with others who had received the same diagnosis, and conducting an array of sometimes risky self-experiments in order to find ways to feel better again.

 

I crossed so many hows on this journey that nobody could tell me how to address: How do I find my triggers? How do I know what they are? How do I avoid them? How do I communicate about this disease? How do I cope with rejection? How do I cope with anxiety? How do I explain this disease to others? How do I know what I can eat? How can I not die from boredom in the kitchen if I can eat only three foods? How can I go amongst people and not pass out? How can I make progress with the doctors? How can I get good sleep? How can I maintain a positive mindset? How do mast cells even work? How do nutrients work? How much do I need? How do I convey all this to my future boyfriend?!

 

Step-by-step, I’ve found answers to these questions. Step-by-step, I started to feel better. Finally, I’ve managed to answer all my how’s and find strategies that allowed me to calm my system to a point where I can participate in life again while actually enjoying my days. This is how I’ve come to write a book about MCAS. I put all these findings down on paper, so others will have an easier time navigating through their mast cell-ridden life. Additionally, this book can be handed to friends and relatives, so they can learn about MCAS and better understand how it feels to be affected by such a disease, and better support their loved ones.