Never Getting Back Together

AUTHOR'S NOTE

Mast Cell Activation Syndrome is an immunological disorder affecting many people the world over, including me. The condition is relatively "new." It was first identified in 2007, so most doctors today aren't aware of the disease or how to identify the symptoms. Another barrier patients face is that the tests required for diagnosis are highly unreliable and not widely available. They're also very expensive and frequently not covered by insurance.

People with MCAS present a wide array of symptoms, further complicating the diagnostic process. I, like Quinn, struggled with MCAS for years before finally receiving a diagnosis. While I believe I've had the condition my entire life, it wasn't until I was fourteen that the symptoms occasionally became debilitating: chronic fatigue, migraines, and premature ventricular heart contractions. To the bafflement of my doctors, this happened with increasing frequency over the years. In my mid-twenties, I started experiencing episodes where I lost strength in my legs. My muscles would tremble to the point where I sometimes couldn't walk. But it wasn't until I was in my early thirties, when I started breaking out in hives daily, that we were finally able to figure out what was happening. I was referred to an allergy specialist at the University of Utah and got an official diagnosis and an effective treatment regimen.

Getting a diagnosis for that condition and learning how to control it is one of the most difficult things I've done in my life. I'm part of a few online support groups. Sadly, I've seen many people posting about how they can't afford the medications they need to control the condition. It especially breaks my heart when young people like Quinn are unable to pay for their prescriptions—people who should be enjoying the prime of their lives.

We need more affordable options for health care in this country. We need doctors who'll take the time to help patients find the underlying causes of chronic conditions, so we can all live our fullest and happiest lives. No one should ever have to choose between paying their mortgage and buying the medications they need.

I hope this book helps to shed light on this condition. And if you have MCAS yourself, I hope this book helps you to feel less alone. Thank you all so much for reading.