John Filippelli, MSW Student Publishes Book On Hyposadias, One of the Most Common Birth Defects in the World.
Author Bio: John is a professional writer and a former President of the Hypospadias & Epispadias Association (HEA). He was born with severe hypospadias and is a co-host of the Hypospadias Conversations podcast.
"I wrote this book to raise awareness about the emotional effects that hypospadias has on boys/men born with this condition as well as their parents and partners. I interviewed men, parents and spouses from around the world - including the United States, Australia, Europe, Canada and the Middle East - about the emotional impact hypospadias has had on their life and how to overcome it. These powerful stories are complemented by interviews with several medical professionals (including pediatric urologists, psychologists, bioethicists, among others) who explain the physical and emotional ramifications of hypospadias.
My goal is to provide a sense of compassion and unity through the stories and insights shared by those brave enough to be part of this book. What I found in writing this book was the great resiliency, courage and acceptance of people, and the knowledge that we are all much more alike than we ever really consider.
I hope this book will give a voice to those who are experiencing the shame and isolation associated with hypospadias and also help the medical community to better understand these components of the condition as well.
Facts:
Hypospadias, a congenital urological birth defect, is when the opening of the urethra is found underneath the shaft of the penis rather than at the tip. Mild cases are closer to the tip where severe cases are further back near the scrotum. It also often (but not always) comes with co-morbidities such as chordee (a bending downward of the penis), meatal stenosis, scarring (strictures), sexual dysfunction, urination issues, physical deformity, and infertility, among others.
It affects 1 in 200 male births (Source: CDC), making it one of the most common birth defects in the world. It has a higher birth rate than down syndrome (1 in 691), cleft palate (1 in 941) and clubfoot (1 in 1000 pregnancies). It trails only autism (1 in 68) and congenital heart defects (1 in 125) in frequency.
There are millions of people around the world affected by hypospadias, yet it is rarely spoken about due to the stigma associated with urological conditions. In my research there were 66 books on Amazon about hypospadias - 65 were medical texts. None addressed the emotional component like my book has.
There is no known cause for hypospadias.
Hypospadias often requires reconstruction surgery, and yet milder cases do not. However, there are several stories in the book where men had surgery as children, knew something was wrong with their penis and were never told by their parents/doctors until they were adults. This ethical issue of "Whose Body Is It?" was an unexpected topic as I researched this book.
Contact John Filippelli - email: hypospadiasbook@gmail.com
Website - www.livingwithhypospadias.com
Podcast - Hypospadias Conversations
Facebook - www.facebook.com/LivingWithHypospadias
Book Details Paperback ISBN: 978-1-63837-217-2 • price: $16.99 eBook ISBN: 978-1-63837-218-9 • price $7.99
Available on Amazon, Apple iBooks and at your favorite online bookseller.
