“Inheritance”: The Key to Finding Cures for Rare Disease

"Inheritance", by Dr. Moalem - Book Review

“Inheritance”, by Dr. Moalem – Book Review

A BOOK REVIEW

Imagine: the ability to change the health of future generations based on what we have genetically inherited – today.

Inheritance” by Sharon Moalem, MD, PhD, a New York Times bestselling author, is simply captivating.  I could not put this book down.  Every page I turned, resulted in my blurting words out of my mouth, “epigenetics and methylation, this is my son”, “this is why we need to SHARE information”, “this is so unbelievably true – in every sense”.  As a parent of a child with a rare disease, I am easily and naturally drawn to genetic research and whatever information I can get my hands on to learn about my son’s disease as well as the best treatment options that will give him a healthy life. When I read “Inheritance”, I gained incredible insight into what is typically a complex science, with what I felt was fascinating and easily understood – helping me to realize how the way we live, has a profound consequence to our future and the future of our children’s children, and also how we live for today.

What absolutely needs to be said; to everyone, is this book needs to be shared.  This is the formulary to the future of our lives and people who hide behind their lives, without ever understanding their genetics and possibilities of inherent rare disease are quite honestly, foolishly blind.  Our genes affect us all, in one way or another, and we need to continue to raise awareness about the affects and effects of how we live, socially and health wise if we are interested in living a life of healthiness – and a future where we minimize rare disease.  ‘There are 7,000 rare diseases and only treatments for only 500 of those diseases1, we need to understand our genetics not tomorrow – but today.

Dr. Moalem reminds us continually in his book, “Inheritance”, that many previous scientists, who were often times disregarded, were actually well beyond their era in research and understanding of how genetics play such an important role in our lives.  I believe Dr. Moalem is also before his time – and I look forward to following future writings, because I’m ready to make a difference in my children’s future family.

In short, “Inheritance” is a must read book for all families struggling with rare disease, and those who want to learn about their genes, DNA and the future of medicine, with a simplicity of writing and detail that will neither scare nor bore you.  I am an advocate for my son, and for rare disease in general and I know first hand how complicated our lives have become.  I also am aware how lack of knowledge hurts not only our current situation in managing my sons’ rare disease, but also our future.  Pediatricians and geneticists world-wide should consider handing “Inheritance” to new patients;  not only is it a great guide on how to give their children the healthiest life possible, but also a gift for those who are given the diagnosis of rare disease. And if you are new to the world of genetics, take off your blinders and learn about your future today.

1. Margaret Anderson, Faster Cures Executive Director

 

Advertisements