Nerve Tumours UK: Supporting people with neurofibromatosis

NEUROFIBROMATOSIS IS A LITTLE-UNDERSTOOD CONDITION AFFECTING OVER 26,500 PEOPLE IN THE UK. MARKUS BELL FROM NERVE TUMOURS UK TELLS US MORE ABOUT THE CONDITION, AND THE WORK THE CHARITY IS DOING TO RAISE AWARENESS

WHAT IS NEUROFIBROMATOSIS?

Neurofibromatosis (NF) loosely translates to mean ‘nerve tumour increase’. It is one of the most common neuro-genetic conditions, causing tumours to grow on nerve endings and with many associated medical issues. NF is an incredibly variable condition and might vary from one person to another even within the same family. Some people may be affected very mildly and have very few health complications. Others may have many more complications, or more serious complications that can seriously impact daily life, and restrict what they can do

The term NF is an umbrella term for three conditions: Neurofibromatosis Type 1, Neurofibromatosis Type 2, and Schwannomatosis.

People diagnosed with NF are both vulnerable and often isolated. Most GPs will have only a handful of patients on their list, so their experience is likely to be limited, and non-medical professionals may have little or no knowledge of the condition. Out of this need for better understanding the charity Nerve Tumours UK was formed 40 years ago by a group of parents, each having a child diagnosed with neurofibromatosis.

WHAT TO DO NERVE TUMOURS UK DO?

A predominantly community-based service, comprised of regional Specialist NF Nurses and Advisors, a national helpline and much more, Nerve Tumours UK funds a unique specialist support network for the 26,500 plus children and adults diagnosed with NF.

The charity offers both medical and non-medical advice and support, in a variety of environments to help suit the complex needs of people with this varied condition. The services support the affected individual and its family from first diagnosis to education and transition into the workspace.

ELLA AND HER BLOG

One such person is Ella, a teen with Neurofibromatosis Type 1. She writes a blog with regular updates documenting her experiences of living with the condition in order to help other people that are going through something similar. She hopes that:

“By sharing not just the bad things but the good ones too, I might help those young people to feel they are not alone and stress that these issues are totally normal for any teen.”

You can read all about her experience with the Nerve Tumour UK charity, as well as her ongoing academic journey to university during the coronavirus pandemic at the website here.

Over 60% of patients will have learning disabilities, yet support is often non-existent or inappropriate, which can make the child’s experience at school difficult and unproductive. Therefore, one of the main services offered by Nerve Tumours UK is a Schools Advisory Service for teachers and parents of children with NF, who are experiencing difficulties at school.

Likewise, in the workplace, we offer an advisory service for employers, who will not have heard of Neurofibromatosis, and will not be aware of how the condition may affect an individual. We can host training sessions for HR and senior managers.

Adults may also need help with information on benefits, how the benefit system can help them, and how to access and apply for such information and support.

The Board of Trustees continues its links directly to the membership base, as it is partly composed of people with the condition, those with a family member diagnosed with NF, and by medics specialising in NF. The core aims of the charity were, and still are, driven by the needs of the NF community, particularly and

primarily for those diagnosed with the condition, but now also from the needs of the medical profession, who we also advise and support.

We are overseen by a Medical Advisory Board (MAB), comprising fourteen leading experts in the NF field, and chaired by the leading expert in Europe, who is also named in the top two in the world. Steered by the MAB, our service continues to meet the communities ongoing needs as well as embrace new initiatives and ideas as medicine and research progresses. Our services are consistently evaluated through patient feedback, consultation with medical professionals including the four English Specialist Centres for NF.

The Nerve Tumour website shares the personal stories of many different people affected by NF, all at different points in their journey.

Nerve Tumours UK info@nervetumours.org.uk 020 8439 1234 https://nervetumours.org.uk