Steve Brine MP met up with some very special constituents on Friday 17th May as they marked World Neurofibromatosis Awareness Day at Winchester Cathedral.
Every day in the UK, a child is born with Neurofibromatosis – some inherit the condition, others are affected by a random mutation.
Neurofibromatosis can affect anyone: any ethnicity, class or sex. Nerve Tumours UK is the authoritative voice of over 26,500 people in the UK who are born with one of the neurofibromatoses: Neurofibromatosis Type 1, Neurofibromatosis Type 2 or Schwannomatosis.
Nerve tumours occur in the three genetic disorders of the nervous System, and each of these conditions has its own range of complications, which can be life-limiting and impair the quality of life. For example, Neurofibromatosis Type 1 predisposes people to many complications, including tumours of the brain and spine; malignant peripheral nerve sheath tumours and can increase the risk of breast cancer.
In addition to the physical impact of nerve tumours, many people experience social and economic disadvantages. It is a particularly isolating condition because it is often met with prejudice and bullying. Evidence suggests that the condition can lead to severe financial hardship later in life.
Steve met up with Sarah and Pete Burbridge, and their daughter Lilly, who was diagnosed with neurofibromatosis type 1 at the age of 5. The family live in Harestock and contacted the MP who until recently had responsibility for the UK rare diseases strategy as the Public Health Minister.
Steve Brine said: “I was so pleased when Sarah reached out to me on this, and delighted to meet up with her and Lilly, as well as the rest of the family.
“Neurofibromatosis is classed as a rare condition but it’s sadly not as uncommon as people think. We urgently need to raise its profile and work with related charities, as well as researchers working in this area, to start developing treatments for children like Lilly.”
Sarah Burbridge said: “Some areas of learning at school are a challenge for Lilly but her perseverance never ceases to amaze us and fill us with pride. We are delighted that Lilly is continuing to grow and develop so well and we are incredibly proud of her resilience. Despite it being a huge challenge, she is now able to ride her bike and is doing well, with support at school. As she grows up we have no way of knowing in what ways the condition will affect her.
“Nerve Tumours UK and The Childhood Tumour Trust do an incredible job and with fundraising and sponsorship, the research into treatment, guidance and maybe one day, a cure may be possible. Funding can also enable more NF nurses to be able to go into schools and teach staff and children about Neurofibromatosis.”
Pictured; Steve Brine MP with Lilly and her family at Winchester Cathedral
Lilly’s Dad, Pete, is raising funds for nerve tumours UK at Ride London this August