We have several Information Sheets available to teachers, enabling them to understand some of the problems that can affect children diagnosed with Neurofibromatosis Type 1 or Type 2.
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, making it difficult to manage.
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.
There are two types of Neurofibromatosis which have different symptoms and cause different problems. It is important therefore to be clear about which type of NF the child has.
Neurofibromatosis type 1:
NF1 is the more prevalent of the two. 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. A proportion of children can also have delayed speech and behaviour difficulties. There is also an increased incidence of attention disorders (ADD/ADHD) and some social communication difficulties in children with NF1.
It is helpful to consider the resources available through the Special Needs process of assessment to support children with NF1.
Click here to visit the NF1 Knowledge Hub where we have a full range of resrouces and information sheets available.
Neurofibromatosis type 2:
NF2 is a rarer condition which 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.
NF2 causes benign tumours (non-cancerous lumps) to grow in the brain and spine. The tumours are different from NF1 tumours. Problems associated with NF2 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.
Click here to visit the NF2 Knowledge Hub where we have a full range of resrouces and information sheets available.