A couple of years ago, Renee was diagnosed with bladder cancer. Her cancer was advanced and she had to have her bladder removed. She had a new bladder made out of her small intestine – an amazing medical advancement in itself. Unfortunately, too much muscle had to be removed during that surgery leaving her with urinary incontinence so a new solution had to be found. Bag or Mitrofanoff - for Renee, the decision was an easy one, Mitrofanoff.
Having worked over 20 years in IT at senior management level, she got a degree in Psychology. Subsequently she worked as a foster carer for 10 years and latterly as a volunteer for various children and family based charities local to her area.
She was keen to resume the day today without having to focus too much on basic needs. Renee had her Mitrofanoff surgery in November 2016. It has not always been easy but she is a keen advocate of the procedure and whole-heartedly recommends what she now calls ‘the new normal’.
Her first Patient Education Day introduction was in Walsall 2017 and a few months later she joined the Mitrofanoff charity team as Chair. Renee is keen to promote the charity's sound medical knowledge base which is used to support all members, parents, children and adults who are facing the challenge of the operation, who are learning to live with a Mitrofanoff or those of us who need to understand how to maximise its lifespan.
John joined the board of Trustees as the advisor on Strategic Planning, had a spell as Chairperson (taking over from Ken Edwards), and is now back in his original role. He is currently working for Barclays in a Technology Design and Strategy role and is hoping that some of this experience can prove beneficial to Mitrofanoff Support. John is married to Lily and has three children Elizabeth, Lulu, and Ben.
Lulu was born with a variety of conditions that meant she had the Mitrofanoff operation just before her 5th birthday. The Charity didn't exist at that time and our family felt pretty isolated and unsure what life would be like. Kyla setting up Mitrofanoff Support was exactly what was needed and John jumped at the chance to get involved.
Jo Lightning joined the Board of Trustees as their legal advisor in 2017. She currently works as a Vice President for a global healthcare company and has been practising law for over 25 years. She is married with 2 sons and lives in Berkshire. Jo first became aware of Mitrofanoff Support when she was looking for advice when one of her children became ill in 2014 and needed the Mitrofanoff surgery. Having found the support network so helpful, she decided that she would like to give back some of her time to work with the charity.
Sharon Fillingham, our Adult Nurse Advisor, is a Clinical Nurse Specialist and has many years of experience and expertise within the Urology and Urinary Diversions. Sharon gives lectures and holds training days to teach other medical professionals across Europe on the Mitrofanoff procedure. Sharon is also qualified and works as a Psychosexual Therapist.
Sharon has worked closely with Mitrofanoff Support since its launch in 2010, and plays a vital role at our Patient Education Days and Mitrofanoff Online Networking Sessions, giving advice and answering questions about managing a Mitrofanoff on a day-to-day basis.
If you have any questions for Sharon, please email email@example.com
Lynda Kenison has been an active volunteer with Mitrofanoff Support since 2013, after her husband Jim had the Mitrofanoff procedure when his bladder cancer returned. Both Lynda and Jim greatly appreciated the information and support they received from Mitrofanoff Support, both by phone and at the Patient Education Days, so became volunteers to help others in similar situations.
Lynda started her career in the oil industry, before moving to the charity sector where she worked for 25 years, most recently managing a cancer support centre for patients and their families. Having retired in 2019, Lynda is keen to use her skills and experience to help people; she volunteers at a care home and the Royal Marsden hospital, and is training to be a reading helper with young children. Lynda was delighted to be asked to join the Board of Trustees in 2021.
David has an ultra-rare disease called Occipital Horn Syndrome, which affects only a handful of people globally. The disease has caused various issues with David’s kidneys and bladder from birth and he has had a Mitrofanoff since he was seven years old. For the last three years David has been working for Rare Revolution Magazine, a magazine focusing on rare diseases. David is passionate about working with the rare diseases community, speaking about his disease at conferences around the world and engaging in campaigns for pharmaceutical companies.
Having attended a couple of Mitrofanoff Support Patient Education Days, David was keen to become involved with the Charity and was pleased to accept the invitation to join the board of trustees in 2021.
Ben was born with bladder exstrophy and has had a Mitrofanoff since he was three years old, so has only ever known self-catheterisation. This has never stopped him from doing anything, including travelling around the world as a teenager representing Great Britain in the Fencing team and running the London Marathon on behalf of Mitrofanoff Support.
Ben joined the board of trustees in 2021 during his final year as a medical student and is able to provide support from both the medical and personal points of view. Ben has a particular interest in improving support for adolescents, as he remembers the challenges of growing up with a Mitrofanoff without knowing someone in a similar situation who could share their experiences.