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Mitrofanoff Support Group
Bladder defects are not a subject that is openly discussed. Hence there is a general lack of public knowledge on what it is like to have a Mitrofanoff. I offer support and reassurance to anyone who may be about to have, or already has a Mitrofanoff and the people closest to them. This is because I felt there was not enough support and guidance out there for adults with Mitrofanoffs.
My primary role is to represent the interests of people with a Mitrofanoff, as I am an expert in living with one. My overriding aim is to raise awareness of what it is like to have a Mitrofanoff and what it means to live with it. By doing this, I hope to address the general lack of public knowledge present and future.
The inventor of the Mitrofanoff (mye-troff-an-off) procedure was Dr Paul Mitrofanoff who was born in France, 1934. He invented the procedure in 1980, to stop incontinence. The Mitrofanoff has been utilized successfully to provide continent catheterisable stoma. The operation is complex and has been successful in many different countries. However complications include stomal Stenosis, leakage from the stoma and Stricture.
My name is Kyla, I started Mitrofanoff Support in early 2010. This was as I had to go back into hospital in 2009 for another major operation. Prior to the surgery I researched the procedure and was amazed to find that there was very little information out there for Mitrofanoff patients and their complications. I have had a Mitrofanoff Urinary Diversions since 1998. I want to offer support and reassurance to anyone who may be about to have, or already has a Mitrofanoff, and of course your nearest and dearest.
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