Fantastic News for Masties!!

An absolutely fabulous announcement has been made on the Mast Cell Research fb page! Dr. Afrin, surely the world expert on Systemic Mast Cell Disease, has written a desperately needed book about this complex disease family, and especially on Mast Cell Activation, which is the disease that has first and foremost (beating even RSD/CRPS by a country mile) ruled my life.

Many of my readers will be familiar with the Occam referred to in Dr. Afrin’s book’s title, but for those who are not, here's a quick history. "Occam" refers here to “Occam’s Razor” a philosophical principle stated by the Scholastic philosopher William of Ockham, born in 1285. This philosophy is one of “parsimony”, which is to say that the answer that is the most simple, the least complex, must be the correct answer unless or until proven otherwise. Sounds harmless, right? Not for those of us suffering with rare, or especially rare and complex disease.

The relevant thing here is that doctors are all taught the concept of Occam's Razor as a basic scientific theory in medical school; it’s drummed into their heads as a basic truth. A common example used to teach this theory is one familiar to pretty much every pre-med student anywhere in the modern world… “When you hear hoofbeats, think horse, not zebra.” In other words, don’t go looking for a complex rare disease when attempting to diagnose a patient, because in the vast majority of cases, it won’t be a “zebra” (or rare disease), it will simply be another horse (or commonly seen garden variety ailment).

This means that if a patient with complex symptoms comes to their doctor and asks "Do you think I could have mast cell disease?" (or ehlers danlos or RSD/CRPS) or any other number of supposedly rare complex diseases, even if they precisely fit the disease picture, the doc will likely say "NO. That's a rare disease, a complex disease, and the odds of you having it are next to nil"... because the simplest answer is always the right answer unless absolutely proven otherwise, according to Occam's Razor.

So patients who very well may have a complex disease often just get dismissed, they don't even get tested and certainly don't get to do a trial of treatment. Presumably, Dr. Afrin is hoping to fight against that construct with his book, as well as educate patients and laypersons. Systemic Mast Cell Disease is an incredible, complex, brutal Beast... one that we need all the help we can get to tame. And this wonderful doctor is pretty high powered help!

Dr. Afrin's work in research, with individual patients and their doctors, and with education and awareness raising has already helped countless sufferers. By publishing this book he will undoubtedly help many, many more. By teaching doctors to turn aside from adherence to Occam's theories, Dr. Afrin could be giving the greatest gift possible to not only those of us who suffer from the incredibly complex, incredibly stressful disease that is Mast Cell Activation, but every other rare and complex disease as well. There are not remotely enough words to express the thanks due to this brilliant scientist and caring humanist... but, thank you, Dr. Afrin, from the bottom of this Mastie's mast cell compromised heart.




Author: Lili Wilde
Date Posted: 2016-03-09   Date Last Edited: 2016-03-09 02:07:52


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