PARENTS ARE PISSED WITH THEIR MEDICAL TEAM'S HYPOSPADIAS MANAGEMENT.
WE ARE HERE TO CHANGE THAT.
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THE PROBLEM
The informed consent process is not standardized & often 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.
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.
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.
VISION
To ensure all parents of boys born with hypospadias have enough information, time, and support to make informed decisions so their boys are positioned to live happy and fulfilled lives.
MISSION
Enhance the well-being of boys born with hypospadias by educating families about the condition and available choices, advocating for improved care and surgical outcomes, and fostering a resilient community through the provision of emotional support.
"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.
DISCLAIMER
Disclaimer: The content on this website is for informational and support purposes only and is not medical advice. Always consult a qualified healthcare professional regarding any medical concerns or decisions.