Information for Teachers

This information is offered to help teachers to understand some of the problems that can affect children diagnosed with Neurofibromatosis (NF).

This is general guidance only and it is important to discuss with the child's parents their particular concerns, especially where there are some health factors that need to be taken into account during the school day.

Other people who can help to support you with information are your local Community Paediatrician. If there is an NF Specialist Advisor in your region, that person may be able to visit school to talk to staff about how best to offer support to children with NF.

Neurofibromatosis or NF is one of the most common genetic conditions. It can affect anyone regardless of family history, gender or ethnic background. It is a variable and unpredictable condition. This makes it difficult to manage. Some people have very few problems whilst others may be more severely affected.

There are basically two separate conditions called Neurofibromatosis. They have different presentations and cause different problems. It is important therefore to be clear about which type of NF the child has.

Neurofibromatosis type 1: Is a relatively common genetic condition. It is usually straightforward to diagnose and does not involve complicated tests. In terms of their physical appearance, you may notice the child is slightly shorter than their peers and has a slightly larger head circumference. They may have several birthmarks (café au lait patches) on their skin. Some children will have other physical health problems that might limit the activities they can do (some examples are loss of vision, epilepsy, or a problem with the backbone). NF1 causes benign tumours (non cancerous lumps) to grow on nerves. These start to appear around puberty, sometimes earlier and sometimes later. They can cause cosmetic problems.

Mild learning difficulties are common in children with NF1. These difficulties are not unique; many non-NF1 children may also have similar problems.

A proportion of children can also have delayed speech and behaviour difficulties. These respond to the usual strategies for managing the difficulties identified. It is acknowledged that there is an increased incidence of attention disorders (ADD/ADHD) and some social communication difficulties in NF1.

It is helpful to consider the resources available through the Special Needs process of assessment to support children with NF1.

Neurofibromatosis type 2: Is a rare genetic condition. It is totally separate and different to NF1. It causes different health problems to NF1 and is not associated with general learning difficulties.

It is most often identified in the teenage years or early twenties. However sometimes it is picked up during early school years. The way it is diagnosed is usually after prolonged medical investigations including MRI scans of the head (brain) and spine.

NF2 causes benign tumours (non cancerous lumps) to grow in the brain and spine. The tumours are different from NF1 tumours. 

The main problems NF2 causes are hearing loss and deafness. Some people may have reduced vision. Others may have weakness in one of their limbs that may limit mobility or strength, or may have balance difficulties.

Depending on the child's difficulties, it is appropriate to consider the Special Needs range of resources to ensure access to all the opportunities that the school can offer. It is particularly helpful to consider assessment by the sensory team if hearing and vision are impaired.

For both NF1 and NF2 it may be helpful to invite the nearest Neurofibromatosis Specialist Advisor to talk to teaching staff so that they gain an understanding of what the diagnosis means, and more importantly, how best to support the child in school. Please contact the charity the Neurofibromatosis Association on 0208 435 1234 to see if this is available in your region.

Children with NF 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.