Report from the 2011 Hypospadias and Epispadias Meeting

We asked HEA treasurer Jim Lake to provide this report on the 2011 meeting. The photo to the left was taken at that meeting, and Jim is seen second from left.

For its 2011 meeting, the Hypospadias and Epispadias Association (HEA) met in October in Schaumburg, a suburb of Chicago. It was my honor to act as local arrangements coordinator. We were particularly excited to feature a DSD training day for local social service agencies on Friday of our conference weekend. Participants from the Lake County Health Department (where I am employed) and other local service providers earned 5.5 Continuing Education Credits.

Pediatric psychologist David Sandberg of Accord Alliance and the University of Michigan was one of the featured presenters for that day, providing the basics on DSD care, and own vice president Tiger Devore did a terrific job bringing together his professional experience as a psychologist with his personal experience as a man born with hypospadias. We had about 50 health providers come, and they were joined by members of HEA, bringing Friday’s attendance to about 80 people, really a great size for this kind of educational interaction. Health service attendees rated the experience very highly.

The second and third days included many wonderful workshops and speakers. Dr. Bill Kennedy, Associate Professor of Urology at Stanford University, who has kindly joined us for many years, again came to educate and support parents of affected children and affected adults. As always, Dr. Kennedy patiently answered our many questions about various treatment options and the alternatives available. Another long-time clinician-supporter, Barbara Neilson (the lead social worker on the DSD team of Sick Kid’s Toronto), also attended and provided us that critical whole-life perspective. HEA's Executive Director Billy Deegan facilitated discussions on addiction management, a challenge faced by a number of our members. That’s just a small sample of two action-packed days. You can read more and see more pictures in our Winter 2011 newsletter. (If you click here, it opens as a PDF.)

As always, the hypospadias- and epispadias-affected men in attendance found the conference to be extraordinarily comforting and informative. This year we provided many scholarships to individuals who could not otherwise afford to attend. There really is nothing like being together in person, sharing our stories face-to-face, to push back at the shame and isolation many of us have needlessly suffered. We truly wish more clinicians would refer affected families and individuals to our group so that we can continue to welcome all in an understanding embrace. We are proud that our website offers much support and information, including through our online Open Houses, but online interaction can’t provide the kind of sense of family that breaks out at our in-person meetings.

We hope this year (2012) more clinicians working in DSD care will join us. We think you’ll find that you learn as much in being with all of us as we get to learn from spending face-to-face time with you.

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