Mitrofanoff Support is a charity that serves 600 members from more than 20 countries, with more than 1,600 people on our closed Facebook group. As such, we can claim to be the largest support network of Mitrofanoffers in the world, and as awareness continues to develop we expect our recent growth to continue into the new decade.
We provide information, emotional support, reassurance and networking opportunities through our website, journal, Patient Education Days and fundraising events. Our last Patient Education Day in Birmingham was our biggest and best ever, and a majority of those present were children and their families, showing that the procedure is increasingly seen as a viable option for the younger generations.
So many people had said “I want to meet others like me” as a reason for attending, and never is this more heartfelt than with children. Kids have it tough these days, growing up in the glare of social media and the pressure to conform to stereotypes. Having a Mitrofanoff is not easy for anyone, but the stigma of being different must be acutely felt in the younger age groups.
However, the day provided the opportunity to focus on the positives that the procedure brings, with engaging talks from our Patron Dan Wood and Nurse Advisor Sharon Fillingham as well as personal stories from four of our members. As a rare procedure, it is easy for Mitrofanoff patients to feel isolated and alone, but the day proved again that the charity operates as one large and inclusive family, and embodied our key message - together we will never be alone. One attendee told us afterwards:
“I really enjoyed Saturday, thank you! I learnt so much, feel not so lost, and understand the Mitrofanoff better. Everyone was so welcoming and lovely. I cried on my way home because it genuinely felt amazing to feel part of something rather than the dreadful feeling of loneliness.”
As with membership itself, Patient Education Days are free to all and supported by our sponsors who attend to display their range of products and services. The next event is to be held at the Wellcome Genome Campus near Cambridge on Saturday 7 March 2020 and all are welcome to attend – see our website for more details.
One of our Gold sponsors, Adrian English of Vesica Urology, has helped to fund a new initiative we launched in 2019, working with the community to train those individuals – carers, nurses, parents, teachers etc - who are responsible for caring for those who have a Mitrofanoff.
It is apparent from the number of enquiries we have received recently that training previously acquired via other routes is not as forthcoming as in previous years, so we have put together an educational seminar which promotes understanding of all things Mitrofanoff.
This is a theoretical course but we do provide practical information e.g catheterisation, management of urinary tract infections, travel, product procurement, etc. Please get in touch if you are interested in this or any of our other services.