What is Neurofibromatosis Type 2?
Neurofibromatosis Type 2 (NF2) is a rare genetic condition caused by a “misspelling” on chromosome 22. NF2 occurs in 1 in 30,000 of the population.
NF2 is different to NF1 because people will need operations or other treatments for brain or spinal cord tumours. Also, people will develop tumours typically in the brain and spine. The hallmark of NF2 is the development of benign tumours called vestibular schwannomas (formerly called Acoustic Neuromas) which grow on both hearing nerves. These tumours can cause hearing loss, deafness, and mobility problems due to the pressure exerted on key nerves.
NF2 can be passed on from parent to child at the time of conception, a person who has NF2 has a 50% (or 1 in 2) chance of passing on the condition to his/ her children.
What problems can occur in school?
Most children with NF2 can join in with the normal range of school activities. The exceptions are children who are limited by a specific health problem such as tumours that bear potential risk from injury. Even this can be accommodated with planning and parental advice. Other problems that may arise include:
- Behavioural difficulties eg. loneliness and lack of confidence
- Social communications problems because of their loss of hearing and speech difficulties.
Should I talk to the class about NF2?
It is important to discuss this first with the child’s parents and be guided by them. Where appropriate, dependent on age/maturity this should also include the views of the child.
It is important to find out from parents what their child knows and understands about their NF2. Parents will expect this information to remain confidential unless their permission is given to share it.
Other children in the class may be curious so the child is not singled out, think about a general discussion at circle time around the things that make us the same and the things that make us different. This will provide an opportunity to explore general themes without specific reference to NF2. It can help the child with NF2 if they have a simple ready answer (such as “it's just something I was born with”) to questions to do with their hearing or speech.
– Jo Clements, SENCO
"Helping them to develop the skills to deal with these issues confidently is a challenge, but brings great rewards both for the child and their teachers."
Social media & bullying
Some of the symptoms of Neurofibromatosis Type 2, such as tumours, deafness and a different way of speaking, can often make the children targets of bullying.
Some behaviours to look out for if you suspect a child may be being bullied include:
- reluctance to go to school
- being mysteriously ‘ill’ each morning, or skipping school
- belongings getting “lost” or damaged
- being nervous, losing confidence, or becoming distressed and withdrawn
Examples of how to help
When a child with NF2 joins your class, it will be helpful to talk with their parents at an early stage about what the diagnosis means for their child and to understand if there are any significant health problems that will impact on the school day. This will enable you to be clear about what support, if any, the child needs and to have a plan in place.
Children with Neurofibromatosis do face challenges on a day to day basis. Helping them to develop the skills to deal with these confidently is a challenge but brings great rewards both for the child and their teachers. It is a real investment for their future. At Nerve Tumours UK, we want to make sure you receive the best support, all of this information below will ensure that this is possible.
School Information pack
This pack helps the school’s professionals understand and support children with Neurofibromatosis, helping them to gain the best quality education. This information pack is designed to give head teachers, SENCO's and relevant school staff a chance to build their own relationship with Nerve Tumours UK’s Support Specialists.
If you would like to request a pack please email firstname.lastname@example.org (All school pack requests must come from the school itself).
Nerve Tumours UK Specialist Support
Nerve Tumours UK helps fund a team of Support Specialists in a number of regions across the United Kingdom. These specialists work to improve the lives of those affected by Neurofibromatosis and provide crucial support to patients and families.
Another service we work to maintain is our National Helpline. Open Mondays and Wednesdays 9am - 5pm, if you need someone to talk to or some help getting to the right place. Call 07939 046 030 or email email@example.com.