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 the 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 resources 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 an 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 resources and information sheets available.
School Information Pack
In our campaign for Teach 500 schools, we wanted to be able to provide schools with an information pack that would help teachers understand and support children with Neurofibromatosis, 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 The Neuro Foundation Specialist NF Nurses. As such, we require that the request for the school packs comes from a member of staff at the school in question. We appreciate that many parents may prefer to request the pack themselves, however, as these were funded by generous donors we have a responsibility to ensure these are delivered directly to the schools. The same information is freely available on our website and from our National NF Helpline which you can contact on 07939046030 or email at firstname.lastname@example.org.
Within the pack is:
- A5 Folder
- Introduction Letter
- Book Leaflet about Amanda Lillywhite's children's book Friends which is available to purchase on Shopify
- Information Leaflet about Neurofibromatosis
- Contact details of The Neuro Foundation Specialist Nurse Network, organisations that are affiliated with the charity and information on how to stay in contact with us on social media.
- Business card
- Pre-loaded USB with all the information you need on NF Type 1 and NF Type 2
We understand that some parents would like to order a pack on the behalf of the school but these packs were funded by donors and we have a responsibility to ensure these are delivered directly to the schools. However, on our website, all the information you need about NF is also on our website. https://www.nfauk.org/resources/knowledge-hub/
A pack can be requested by a teacher, SENCO's or a relevant member of staff.
If you would like to request a pack please email email@example.com.
If you live in the UK you can request a pack. However, if you live outside the UK please contact our Specialist Advisors by emailing Helpline@nfauk.org or call 07939046030 for further information.