by Elizabeth Paddock
“Can I buy a few books?” I called to my husband who was washing dishes one room over.
“Sure,” came the reply. He stopped asking questions a long time ago.
I’ve had a lifelong addiction to books, but since becoming sick they are one of the last connections I have to my former life- to the classes I can no longer take, to the intellectual discussions I rarely get to have with friends or colleagues, to the learning that has long driven my soul. Thankfully, my husband recognizes how desperately I need this connection. He never says so much as a peep when I lose all self-control on Amazon Prime and 48 hours later seven books are delivered to our doorstep. He never complains when I delve into all seven books at the same time- because what else is one to do when they all arrive at once?!
This time, however, I was buying multiple copies of the same book. I placed a hardcover copy in the cart for myself. Then three paperback copies as well. One as a gift to my rheumatologist- the first person in six years to promise me, “We’ll get to the bottom of this.” Two as gifts to doctors who never bothered to take off their blindfolds while examining the elephant that was my medical history. Actually, there are well over three dozen of those doctors and I fear most, if not all, are still wandering around blindfolded and clueless, diagnosing tails and tusks without ever seeing the larger picture. But I didn’t want to push my book buying luck with my dear husband and stopped short of ordering 36 copies. Besides, the logical part of me knew I could always come back and buy more later.
One could say it was a bit risky buying multiple copies of a book I had never read. Indeed, I hadn’t read this book and as it was brand spanking new, there wasn’t a single review. But I had read this author’s work before. Nineteen single-typed pages of it, entirely about me. The book, Never Bet against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity, was written by Dr. Lawrence Afrin. I happen know Dr. Lawrence Afrin. He saved my life.
Since I was intimately familiar with Dr. Afrin’s thorough and meticulous approach to his life’s work, I wasn’t the slightest bit surprised when my books arrived- each copy a whopping 465 pages. I stopped for a moment to realize that in my hands I held the first and only comprehensive guide to the rare disease that had taken over my life. I was overcome with emotion- feelings of relief, justice, and hope washed over me. The power this book held could be life changing- for me and for the countless number of other people suffering from a condition the medical profession knows virtually nothing about.
As I have come to expect from him, Dr. Afrin doesn’t disappoint. Never Bet Against Occam, though daunting at first glance, is crafted in a brilliant manner that allows the average patient or family member to comprehend it all while also including enough medical information to serve as a detailed training guide for any level of medical professional. The title may initially be puzzling, but as the book unfolds, it becomes beautifully simplistic. Occam’s Razor is a philosophical theory applied most often in the sciences. It states that if given multiple hypotheses, the simplest- the one that accounts for the majority of the information in one answer- is most likely to be the truth. The “razor” serves to slice away all other assumptions and complexities, leaving the simplest answer to stand true.
The book opens with Dr. Afrin presenting the case study of a woman who turns out to be his very first mast cell patient. She was a medical mystery no one else had been able to figure out. Dr. Afrin explores the possibility of several rare diseases, though he soon begins to wonder how likely it is that this particular woman was lucky- more aptly, unlucky– enough to have fallen ill with multiple rare diseases. And of those rare diseases, she appeared to have the rarest forms of each. In fact, she appeared to be so very rare that even a true medical detective like Dr. Afrin himself had trouble finding references to any similar presentations in a massive collection of medical literature. So he began to wonder- was there a more simple answer? Was there possibly just one rare disease that could account for her random array of strange symptoms?
As he accumulates additional patients with puzzling presentations, Dr. Afrin learns the truth in the principle of Occam’s Razor. It is rather unlikely that patients, like myself, have been struck by lightning a dozen different times- accumulating multiple diagnoses that appear to be the rarest forms of already rare diseases. Instead, he began to realize we have simply been struck by lightning just once. There is indeed one diagnosis that can account for a dizzying array of disabling symptoms that on the surface, have scarcely any connections between them. That unlucky bolt? Mast Cell Activation Disorder.
Once Dr. Afrin explains how he became familiar with the inner workings of the mast cell, the remainder of the book explores how aberrant mast cells can wreak havoc on each and every system in the body. Patients will recognize bits of themselves in each and every case study. At times it will feel like looking into a mirror. Not only will you see yourself in this mirror, but in the reflection you will see someone standing behind you. A doctor. A doctor with gray hair and a white coat. A doctor who truly sees you for the first time- in all your complexity. As a warning to mast cell patients triggered by emotions, this realization may lead to degranulation. Being seen for the first time is a powerful, emotional experience. It may be best to have your bottle of dye-free liquid Benadryl close by!
For doctors, nurses, and other medical professionals, Never Bet Against Occam, is an incredible learning tool. It is a mast cell disease primer that can help professionals the world over begin to recognize the possibility that some of their most complex patients may be suffering from one unifying disorder. The book also offers medical professionals a clear and concise guide to the intricacies of diagnosing and treating mast cell activation disorder- two chapters worth their weight in gold. Hands down, without a doubt, no questions asked- this book should be required reading for anyone and everyone entering the medical profession.
In the rare disease community there is a popular saying- “We are not rare, we are rarely seen.” Dr. Afrin believes this to be particularly true of mast cell disorders. Currently, mast cell disorders are considered very rare. However, he has significant reason to believe aberrant mast cell activation may be at the root of a number of prevalent and difficult to treat chronic inflammatory disorders such as Fibromyalgia, Irritable Bowel Syndrome, Chronic Fatigue Syndrome, and Interstitial Cystitis. It is just that no one has gone done the research needed and no one has been trained to see the potential connections. Yet. The first to admit his own work is just the tip of the iceberg, Dr. Afrin concludes the book with a personal call to action. There is so much research to be done. So many to be educated. So much more for so many to learn about the true power of mast cells. He needs our help to bring this rare disease to light, as I know he believes in his heart of hearts that each and every one of us deserves to be seen. To be heard. To be helped. The mast cell community is rising to the challenge. We’re snatching up every copy of the book we can get our hands on, many handing them out to doctors like candy on Halloween. (For the record, I will admit I went back and ordered an additional three copies!) If you or someone you know suffers from a difficult to diagnose, treatment refractory illness of an allergic or inflammatory nature, please share this wonderful resource with them. Encourage them to share it with their doctors. The rare disease community may be small but we are mighty. With Dr. Afrin at the helm of the ship, together we can make a difference!
About the Author | Elizabeth Paddock is a mother, wife, and writer from southeast Michigan. With a master’s degree in clinical social work, Elizabeth has been a stay-at-home mother of identical twin boys for the last six years which has allowed her to focus on her family and her writing. She has written for the medical talk show Ask Dr. Nandi as well as the award winning Hollywood Mom Blog and is currently working on her first book about gifted education. Elizabeth has a primary diagnosis of Mast Cell Activation Disorder along with secondary diagnoses of Postural Orthostatic Tachycardia Syndrome and Joint Hypermobility Syndrome. For more information on mast cell disorders, please visit The Mastocytosis Society at www.tmsforacure.org.