I am just beginning Chapter 5 of the incredibly informative and immeasurably helpful 450+ page book, “Never Bet Against Occam: Mast Cell Disease and the Modern Epidemics of Chronic Illness and Medical Complexity” by Dr. Lawrence Afrin and, as promised, I will be writing posts over the coming weeks summarizing what I’ve learned (and there is a lot already!) from his infinite wisdom on the subject.
First, I will start this series by saying that I fully believe this is THE book we all need to have and read because it covers so many things relating to mast cell activation disease in particular, which seems to be not as “rare” as doctors initially believed. It’s certainly not as rare as its cousin, mastocytosis. In fact, chapter five addresses this in the first few sentences:
Early research on the epidemiology of MCAS is suggesting that as many as 14 – 17% of the general population is affected. That’s one out of every 6-7 individuals. Look around you right now. If this early research is correct, then if there are at least five other people in sight, odds are at least one of you has MCAS.
That’s a LOT of us suffering, some of us with extremely debilitating symptoms, like mine, and only now are doctors finally starting to realize that this may be an undiagnosed epidemic. A very, very few doctors are aware of this, though. Which is why I blog about this disease: to bring awareness to any and everyone. I also do it because it helps me track my progress. This keeps me focused on my own health and there’s no better way to tackle any problem, medical or otherwise, than with knowledge. This book is packed with it.
Symptoms can initially appear at any age, but most commonly it is as an adolescent or child, sometimes even as an infant or neonate, at which symptoms first appear.
Ding, ding, ding!! I fit this profile and so does my son. We both showed signs almost immediately after birth, although mine was much, much worse than his and almost killed me as a baby.
Due to the non-specific nature of almost every symptom of the disease, though, the diagnosis virtually always goes unsuspected in childhood and adolescence — and for a very long time thereafter.
I spent my childhood extremely ill with severe anemia, constant infections, abdominal issues, allergies and fainting/seizures. I saw several specialists and had tests run but none of them could ever figure out why I was so ill from head-to-toe and eventually my parents gave up on getting a proper diagnosis for me. I then spent a good deal of my life seeking answers to no avail myself. I can’t blame the doctors, though, because there WAS NO MCAS until just recently for them to diagnose!
Dr. Afrin explains it brilliantly in the next few sentences:
MCAS has been recognized only so recently that it must be the case that most MCAS patients have gone to their graves with it never having been diagnosed. But don’t blame the doctor for missing it. Even if one sets aside the fact of the general lack of awareness of MCAS in the medical community, there’s also the fact that kids inevitably get sick from time to time. Does every sniffle mean MCAS? Every tummy ache? Of course not. But chronic sniffles or tummy aches, or headaches, or rash, or aches and pains, or fatigue — especially chronic symptoms in multiple systems which can’t be explained by routine testing and which don’t respond well to standard treatments — might be signs of MCAS. MCAS is chronic.
He goes on to explain that most of us, by the time we get our diagnosis, have been ill for decades if not our entire lives. Even people who suspect that it came on later in life, say after a virus or trauma, when pressed, can begin to see a pattern of symptoms from childhood that they may not have recognized as MCAS-related. I believe in my own birth family at minimum 4 out of us 5 kids have some level of MCAS. My deceased mother fit the profile and I believe my estranged half brother is dying from complications of mast cell disease. My middle son has been diagnosed and my other two children also show symptoms, and did from birth, albeit not nearly as bad as their brother and I. That doesn’t mean it won’t turn on them.
This disease is chronic, epidemic and runs in families. That’s the takeaway here, for me at least, based on personal experience with this disease. Dr. Afrin only confirms this in his book and I look forward to getting through every page of it. I really enjoyed the first four chapters which basically take you through detailed descriptions of patients he saw with varying symptoms and test results which eventually led him to the realization that he was seeing MCAS over and over again, but didn’t know it until that fateful “ah-ha moment”. From there he became a leading expert on this disease and gave us this book, thankfully, so we can all become better informed.
On that note, I will end this post with these words, still from the first page of Chapter 5:
No system in the body is immune to MCAS…
Think of what that means for those of us suffering. No system is immune. Not one.
Every single system is affected in my case and it has made my life utterly miserable at times.
In my next post I will discuss more about his and my own thoughts on this subject and also the fact that MCAS driven, multi-system symptoms typically do not fit any pattern of any other recognized syndrome or disease and testing often yields negative or “borderline” results. I am certain anyone reading this who has been diagnosed with MCAD will attest to the last part. Most of us have probably experienced not just the disheartening “everything looks normal!” test results, but also the resulting worsening of symptoms caused by the “cures” offered to us by unaware doctors.
Again, knowledge is power so I will happily continue to share what I learn and, like with this book series, what others have learned — especially the experts. Together we can be empowered and hopefully can overcome this disease or at least manage it well enough to live full, happy lives. Maybe we can even look forward to a cure someday!! So make sure to join me next time as I dive back into chapter five of the “MCAD Bible”.
Won’t you please take a moment to share this post on social media so we can get the word out about MCAS together?I can’t do it alone, obviously, so I rely on dear readers like you to help spread the news. Remember what Dr. Afrin said, one out of SIX of us may have this, which means people on YOUR friends list most likely have this and don’t know it!! A lot of people are suffering needlessly and it’s the least we can do to help them.
xo Michelle Dellene