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The inventor of the Mitrofanoff procedure was a Frenchman, Dr. Paul Mitrofanoff, who devised the procedure in 1980 to treat urinary incontinence. The Mitrofanoff procedure has been used successfully to provide a continent catheterisable duct from the bladder, in place of the urethra, terminating in an outlet on the abdomen, a stoma.  Although complex, the procedure has been used successfully in many countries. However, complications can occur, and include stomal stenosis (a narrowing of the outlet), constriction of the duct, and leakage from the stoma.

The “Mitrofanoff” (as the procedure is called) creates a channel which acts in the same way as a urethra and is made from the appendix, or a portion of the bowel formed into a suitably narrow tube, or both.  The channel is made to go directly from the bladder to an exit (a stoma) either through the navel or beside it. Therefore intermittent self catheterisation via the Mitrofanoff is required to empty the bladder, which can be done without undressing or moving out of a wheelchair. This surgery is quite often carried out in conjunction with other procedures, either to enlarge the bladder or to create a urinary reservoir.  The Mitrofanoff enables people to live a normal life and maintain dignity.

The Mitrofanoff is an excellent alternative procedure for dealing with incontinence due to a variety of causes, such as spina bifida (a congenital malformation of the spine), bladder exstrophy (a congenital malformation in which the bladder appears to be turned inside out), epispadias (an abnormality of the penis), ectopic bladder (bladder in the wrong place), patients with failed surgery for posterior urethral valves, after significant pelvic surgery, or as a consequence of radiotherapy for the treatment of malignancies.

Mitrofanoff Support was founded in early 2010 by Kyla Rogers. The primary role of the organisation is to represent the interests of people with a Mitrofanoff, as the members are experts in living with one. The 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, it is hoped to address the general lack of public knowledge, for the present and in the future.

Due to the success of the organisation, on 11th January 2012 Mitrofanoff Support gained charity status, and the number of members is growing rapidly.  The management committee is currently a team of seven who all have specific roles to enable Mitrofanoff Support to run smoothly and succeed in its aims.

Mitrofanoff Support is unique as it focuses on social media and is extremely proactive online. It has its own forum, social network and live chatroom, where people can talk and interact with one another at any time of day. It also enables members to share videos and pictures with each other from fundraising events and education days.  Mitrofanoff Support enables people to network, socialize and gain friendships with others going through the same type of issues.

Mitrofanoff Support also works with Consultants and Hospital Trusts to improve the education and knowledge of medical professionals, to enable them to understand what it is like to live with a Mitrofanoff and how it can affect individuals psychologically and in their relationships.

For more information please visit the website www.mitrofanoffsupport.co.uk (in English) or get in touch at info@mitrofanoffsupport.co.uk

U.K. Registered Charity Number: 1145382

All information given on the Mitrofanoff Support website is provided by patients themselves and not by qualified medical professionals.  You should always consult a doctor before following any advice given on the website.

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