I was born with a condition called Bladder Exstrophy, and in all my years dealing with the condition it was rare to run into another individual with the same birth defect. Thankfully there are two mailing lists for Exstrophy – one just called Exstrophy (which is primarily populated by the parents and family members of Exstrophy Patients) and ExstrophyA (the adult patients of Exstrophy, no family members, just us patients).
The lady who moderates the two lists is a Social Worker, attached to the Hospital For Sick Children (Sick Kids), who’s practice mostly revolves around Exstrophy. Yesterday was a social get together for kids, family members and adult patients. I thought I wouldn’t enjoy myself, mostly because the hysterionics that some the parents pull on the mailing lists. But I was pleasantly surprised.
Barb Neilson was there, the Social Worker, and two pediatric urologists — they were part of a panel discussion with us shooting out questions and sharing experiences amongst ourselves. One thing the parents don’t think about, when their kids are going through these surgeries, is what will life be like once they are adults. A few of the parents were a little white and wide-eyed when a few of us adults (in a sea of about 40 there were 6 adult patients) shared our experiences. One fellow is suffering from major sexual dysfunction – whenever he gets aroused his penis hurts and if he does ejaculate the ejaculant doesn’t leave the body, it backs up into his bladder, which causes additional pain. One lady talked about prolapsing, and another talked about cosmetic surgery to “normalize” the look of the vaginal area… in that in some cases the clitoris is sliced in half during the initial surgery (usually done within a few days after birth) and/or the vaginal opening is made too small.
We were asked, by the parents and the panel, if we take any holistic measures to reduce the occurence of UTIs. I said I tend to drink a lot of water and take my vitamin C. Many of the parents are taking their kids to naturopaths and have them on all these unusual herbal cocktails. Thankfully one of the urologists piped up and said that a study was done to see if drinking Cranberry juice was beneficial — turns out it is the quantity of fluids which is the most beneficial.
The pediatric urologists were interested in us adults because once one of their patients hits 18 they have to go onto an adult hospital, so the peds never see the outcomes of their patients’ experiences within an adult world of exstrophy.
I did enjoy myself and met some lovely people. There was one couple who drove all the way from Montreal so that their 15 year old daughter could chat with other teens and us old farts. Another lady came in from Kingston. And there was this couple who’s daughter is 13 months old, madly scribbling down notes whenever anyone spoke as they are trying to get as much information of what her current needs are and what will she eventually need a few decades from now.