Hypospadias
Conversations
Podcast
All Episodes
Episode 1: Hosts John and Bonnie Discuss Hypospadias Issues
Hosts John and Bonnie discuss issues surrounding living with hypospadias.
Episode 2: Hosts John and Bonnie Discuss Parenting with Special Guest John’s Mom
Hosts Bonnie and John discuss some of the issues related to parenting a child with hypospadias, with special guest, Diane (John’s mom).
Episode 3: Bonnie interviews John about his book Living With Hypospadias
Bonnie talks with John about his experience writing the book Living With Hypospadias. John discusses the process, his favorite passages and more.
Episode 4: Discussion with Author and Renowned Historian Alice Dreger, Ph.D.
Bonnie and John welcome renowned historian Alice Dreger, Ph.D. to Hypospadias Conversations to discuss the ethical considerations behind hypospadias repair surgery as well as Alice’s book Galileo’s Middle Finger. Alice Dreger is a bioethicist, writer, historian, journalist and former professor of clinical medical humanities and bioethics at the Feinberg School of Medicine, Northwestern University in Chicago, Illinois.. Her TEDx lecture has been viewed over a million times. Learn more about Alice at her website alicedreger.com.
Episode 5: Discussion with Author, Educator and Advocate, Arlene Baratz, M.D.
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Bonnie interviews Arlene Baratz M.D. Dr. Arlene Baratz is a physician and mother of a family affected by complete androgen insensitivity syndrome (CAIS). She is retired after 30 years as a breast imaging specialist. She is a long-time educator, advocate and author in the field of intersex/variations of sex development. As Coordinator of Medical and Research Affairs for AIS-DSD Support Group, and past Chair of Medical and Research Policy Committee for InterACT Advocates for Intersex Youth, Arlene has worked for 20 years with clinicians and researchers to promote research reflecting prioritization of patient perspectives focusing on health and well-being outcomes. Arlene and her daughter Katie, the first young person to speak openly about living with AIS, appeared on Oprah’s 2007 Growing Up Intersex. Her family is also featured in the 2011 BBC documentary Me, My Sex, and I. Arlene served seven years on the AIS-DSD Support Group board, has been a moderator of its Parents Group, and contributed to the first website created specifically for families, dsdfamilies. She served for 13 years on the board of interACT Advocates for Intersex Youth; which is focused on human rights and ethical and legal issues.
Episode 6: Discussion with Advocate and former HEA Executive Director, Jim Lake
Jim Lake has been at the forefront of advocacy for disorders of sexual development. He has been a member of HAA (Hypospadias Association of America), the precursor to HEA, (Hypospadias Epispadias Association). Jim has been involved with HEA as a board member, treasurer, president and executive director. Although he is no longer on the board, he continues to support fundraising for the organization. In this episode, Jim discusses being born with penoscrotal hypospadias, the numerous surgeries he’s had over his lifetime, and how he’s overcome the shame and secrecy he experienced.
Episode 7: Discussing Hypospadias and Self-Esteem with Tom, A Man With Hypospadias
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Co-hosts Bonnie and John discuss self-esteem and growing up with hypospadias with Tom, a man from the UK who was born with hypospadias and other co-morbidities. Tom discusses his journey from not talking about his hypospadias to becoming comfortable with his body enough to become an outspoken advocate about the condition.
Episode 8: A Mom’s Experience with Her Son’s Hypospadias Journey Featuring Ashley
Co-hosts Bonnie and John sit down with Ashley, a mother whose adult son was born with penoscrotal hypospadias with chordee. Ashley shares their journey through his 16 surgeries, the emotional impact for their family, and how they’ve coped and remained resilient throughout it all.
Episode 9: Following up with Jim Lake Discussing Reversal Surgery
Co-hosts Bonnie and John sit down for part 2 of our ongoing discussion with Advocate Jim Lake to go into further depth about surgical reversal options that may be available for those who have had Hypospadias repair surgeries in the past.
Episode 10: Follow up with Mom Ashley After Her Son’s Most Recent Repair Surgery
TRANSCRIPT TO COME
Co-hosts Bonnie and John sit down for part 2 of our ongoing discussion with Ashley, to discuss her son’s 16th Hypospadias repair surgery, months prior, to find out how he’s doing now.
Episode 11: First Segment in a Special Multi-part Series with Dr. Hazem Mosa
In the first segment of this special multi-part series, hosts John and Bonnie speak with Dr. Hazem Mosa to discuss the complex process of informed consent for families deciding on hypospadias repair surgery, “the elephant in the room”, co-morbidities with hypospadias and resources for parents. Dr. Mosa is a senior fellow who trained in pediatric surgery in Alexandria University, Egypt and trained in pediatric urology at Guy’s and St. Thomas’ Hospital and Great Ormond Street Hospital for Children in London, England. He currently works in Cambridge University Hospital. His research focuses on hypospadias surgery complications, informed consent and parental decision making in hypospadias surgery.
Episode 12: Second Segment in the Special Multi-part Series with Dr. Hazem Mosa
TRANSCRIPT TO COME
Co-hosts Bonnie and John continue their conversation in part two of the special multi-part series of Hypospadias Conversations featuring Dr. Hazem Mosa, Senior Fellow in Pediatric Urology. In this segment, Dr. Mosa discusses National health care systems of different countries, what constitutes a complication in hypospadias surgery, what does success look like in hypospadias surgery, and the long-term emotional effects that hypospadias surgery can have on men, among other topics.
Episode 13: Third Segment in the Special Multi-part Series with Dr. Hazem Mosa
TRANSCRIPT TO COME
Co-hosts Bonnie and John continue their conversation in part three of the special multi-part series of Hypospadias Conversations featuring Dr. Hazem Mosa, Senior Fellow in Pediatric Urology. In this segment, Dr. Mosa discusses the roles of mothers and fathers in supporting their child with hypospadias surgery and doctor appointments; how patients are bridging the gap between pediatric and adult doctors; as well as the impact of chordee on sexual and urinary health—and how this curvature of the penis impacts repairs and the decision to have hypospadias surgery in general.
Episode 14: Fourth Segment in the Special Multi-part Series with Dr. Hazem Mosa
TRANSCRIPT TO COME
Co-hosts Bonnie and John conclude their conversation in part four of the special multi-part series of Hypospadias Conversations featuring Dr. Hazem Mosa, Senior Fellow in Pediatric Urology. In this segment, Dr. Mosa discusses common emotions and concerns of parents upon learning of their child’s hypospadias diagnosis, the resiliency of men with hypospadias, what closure looks like for families affected by hypospadias, and how to make hypospadias surgery less traumatic.
What People Are Saying about Living With Hypospadias
5 out of 5 stars
Personal emotional experience and medical history combined in a most moving and helpful account
“Written both from the point of view of a man living with hypospadias and a manual for other men living with hypospadias, this book serves to educate, inform, and explain how it is possible to live with this “variation on the normal” and be happy with it. A vital piece of reading for all teenagers and men with hypospadias who feel isolated. (And those who don’t!)”
—R.B., Amazon customer, United Kingdom
5 out of 5 stars
The best book about hypospadias people
“A very good book about hypospadias, clearly wrote, from a personal perspective. No other book exists like that. I recommend it to all the people affected by hypospadias, friends and families. It is easy to read and full of good information.”
—D., Amazon customer, Spain
5 out of 5 stars
Brilliant and much needed publication!
“This book is informative and thought provoking. It provides answers to a lot of questions for both parents and patients as well as brings up questions one might not have thought to ask otherwise. Absolutely brilliant source of emotional support and knowledge. The author’s life long experience of the condition and vast research gives you excellent insight to what living with hypospadias really is like.”
—N.D., Amazon customer, United Kingdom
5 out of 5 stars
An excellent read!
“This book is very helpful for families dealing with a child born with hypospadias. It explained in full detail the different stages of hypospadias and how it affects the child both physically and emotionally throughout their lifetime. The personal stories, especially from the author himself, showed the impact it has on families dealing with hypospadias. Outstanding book!”
—Amazon Customer
5 out of 5 stars
Insightful and informative.
“The author using his own experience to guide the reader through a discussion of a common but widely unknown birth defect. Not only the physical effects but also the emotional and mental challenges men with it suffer.”
—M.D., Amazon Customer
“I’ve never read anything so in-depth about hypospadias before, especially with [such] honest quotes from doctors and people with hypospadias. This book has helped me come to terms with a lot of my built up emotions as for a long time I felt my emotions were not justified. Living With Hypospadias will definitely help a lot of parents too. My parents just started reading through the book and wished this sort of information was available when I was born. Thank you for help raising awareness and supporting others.”
—T.D.
A truly candid personal look into the author’s world. Excellent.
“Frank, honest and revealing. A great read.”
—Dr. B.
Wonderfully written
“Wonderful guide for patients, parents and medical community. Well written and addresses bio-psycho-social aspects of care and needs.”
—L.V. Clinical Social Worker
“Living With Hypospadias has taken a difficult topic and done a terrific job in addressing these issues for all of us who have suffered so much over the years. The book masterfully blends the medical and the psychological strands, and the personal comments add a huge amount for the reader. This book, Living With Hypospadias, has unlocked a door for so many of us.”
—W.S.
Content on the Living With Hypospadias website including the Hypospadias Conversations podcasts and blogs are intended for informational and educational purposes only and should not be considered a substitute for medical advice or treatment. If you have concerns or questions about your health or that of your child, please consult a physician.