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Parent directory

Amanda - posted on 02/12/2011 ( 3 moms have responded )

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I'm putting together a parent directory for hospitals, clinics and doctors offices to hand out to patients/families dealing with hypospadias, epispadias and bladder exstrophy. If you're interested in helping other families cope with the frustration and loneliness that comes with these disorders, please send me a message with your name, contact information, the defect you're dealing with and the age of your child. As soon as its finished, everyone on the list will receive a copy. This information will not be made public, but will be given to patients and families with hypospadias, epispadias and/or bladder exstrophy in their lives. Thanks!

Amanda

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3 Comments

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Elizabeth - posted on 02/19/2011

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Hi Amanda, I will private message you our story tomorrow...we all have the flu right now and need some rest!

Amanda - posted on 02/19/2011

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Since no one has replied, let me tell you my story and why I want to make a parents directory. My son, he's almost 8 now, was born with penopubic epispadias. Simply put, His urethra wasn't in his penis at all. it opened at his abdomen. He had chordee and is incontinent. He just had his 6th surgery and is self cathing through a Mitrofanoff in his belly button. My family had NO support for the first 3 years of his life. After going through all of that, I can't sit by and let other parents try to deal with out the support we all need. I found HEAinfo.org when my son was about 3-4 years old and its been the greatest. Please help me and others by adding your name. Thanks

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