Parents Improving Support, Surgery, Education, and Diligence with Hypospadias
PARENTS ARE PISSED WITH THEIR KIDS' HYPOSPADIAS SURGICAL OUTCOMES.
WE ARE HERE TO CHANGE THAT.
Alata
Alice
Open Sans
Noto Sans
Bebas Neue
Great Vibes
Rock Salt
Exo
Belgrano
Overlock
Cinzel
Indie Flower
Staatliches
Roboto Slab
Lato
Noto Serif
Open Sans
Montserrat
Ubuntu
Rubik
Delius
Amiri
Montserrat
THE PROBLEM
The accepted post-op complication rates are too high
Hypospadias is a relatively common but under-recognized condition. It exists on a spectrum from mild to severe, where severe hypospadias often necessitates complex surgery. These surgeries are technically challenging, and there is no gold standard technique at this time. For best outcomes, a surgeon with extensive expertise is needed, and this service is not consistently available to all patients in different regions. The surgical complication rates are too high, up to 49 - 68% for severe hypospadias. *Source below.
Parents don't know what they are signing up for
Parents often proceed with surgery without an in depth understanding of the condition itself, whether treatment is indicated and why, what the treatment options are, which urologists are best suited to provide this care, what their surgeon's level of experience is, the high probability of post-op complications, how these complications would be managed, and what the long term impact of hypospadias and hypospadias surgery could be.
Children and adults with post-op complications are left with debilitating urologic issues that affect their physical and mental health
Families feel isolated and are not being offered adequate follow up care or support by their medical teams.
WHO WE ARE
Parents
Improving
Support,
Surgery,
Education, and
Diligence
With HYPOSPADIAS
"The HEA supports the important work that PISSED.ORG is doing in protecting boys born with Hypospadias. PISSED.ORG is giving parents a holistic approach to Hypospadias care and a thorough understanding of treatment options available to their children. Transparency of information and education will help parents decide what they feel is right for their child. "
- Hypospadias and Epispadias Association
“PISSED offers a vital service in raising awareness and advocating about complications related to hypospadias surgery. The education and support that PISSED provides will enable many parents of boys with hypospadias to better understand the condition as well as the risks and benefits of surgery.”
- John Filipelli
Author, Living with Hypospadias and co-host of Hypospadias Conversations podcast
"... As the father of a son who had unsuccessful surgery until we found a different urologist, I support efforts by PISSED to help them avoid the problems that we and so many other parents have experienced. Please join them to make hypospadias care better for every boy with this birth defect!"
- Executive Director
Operation Happenis
Sources
Citations:
- Long, Christopher J., et al. “Intermediate-Term Followup of Proximal Hypospadias Repair Reveals High Complication Rate.” Journal of Urology, vol. 197, no. 3 Part 2, Ovid Technologies (Wolters Kluwer Health), Mar. 2017, pp. 852–58. Crossref, https://doi.org/10.1016/j.juro.2016.11.054.
- McNamara, Erin R., et al. “Management of Proximal Hypospadias With 2-Stage Repair: 20-Year Experience.” Journal of Urology, vol. 194, no. 4, Ovid Technologies (Wolters Kluwer Health), Oct. 2015, pp. 1080–85. Crossref, https://doi.org/10.1016/j.juro.2015.04.105.
Copyright PISSED 2021