Redbridge SERC

Neurofibromatosis

Description

  • Neurofibromatosis (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 making it difficult to manage.
  • Some people have very few problems whilst others may be more severely affected.
  • NF1 affects 1 in 2,500 children
  • It affects males and females equally.
  • An affected person has a 1 in 2 chance of passing the condition on.

Fact sheets

Training / Help

Further help and support can be obtained from;

  • Newbridge Outreach
  • Hatton Outreach
  • Occupational therapy
  • SERC

Videos

Screenshot for video: Tomcat adapted trikes

Tomcat adapted trikes

Tomcat Trikes in action

Screenshot for video: Awareness film good for training

Awareness film good for training

Awareness films- concise and easy to use for training.

Screenshot for video: 16 year old girl with Neurofibromatosis

16 year old girl with Neurofibromatosis

Short clip featuring a 16 girl who has NF1

Learning Aids

Please offer me a seat badge

Please offer me a seat badge

Available from:

TfL have recently introduced a badge to help Adults and Children who may have difficulty standing/ waiting on all TfL transport. It is designed to be supportive for hidden disabilities and medical conditions. The badges are free- you do notneed…

Frequently Asked Questions

  • What are the characteristics of Neurofibromatosis Type 2 (NF2)?

    Neurofibromatosis type 2:

    • is a rare genetic condition
    • it is totally separate and different to NF1.
    • NF2 causes benign tumours (non cancerous lumps) to grow in the brain and spine.
    • 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.
  • What are the characteristics of Neurofibromatosis Type 1 (NF1)?

    Neurofibromatosis type 1:

    • is a relatively common genetic condition.

    Pupil's with NF1 may;

    • be slightly shorter than their peers
    • have slightly larger head circumference
    • may have several birthmarks (café au lait patches) on their skin
    • may 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)
    • have mild learning difficulties
    • have delayed speech or behavioural difficulties

    There is an increased incidence of attention disorders (ADD/ADHD) and social communication disorders.

    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.

  • Are there different types of Neurofibromatosis?

    There are two types of Neurofibromatosis;

    • Neurofibromatosis Type 1 (NF1)
    • Neurofibromatosis Type 2 ( NF2)
  • What are the educational implications for students who have Neurofibromatosis Type 1 (NF1)?
    • Learning and behavioural difficulties to varying extent
    • Lumps growing internally can be painful.
    • Increased risk of epilepsy.
    • Speech difficulties 30– 60 % pupils have learning difficulties.
    • High proportion of pupils have difficulties with perception and performance.
    • Concentration—pupils are easily distracted or can become fixated upon one item
    • Problems with coordination can affect balance, gross and fine motor skills.
    • Organisation and memory—some pupils have difficulty with short term memory and benefit from tasks being broken down into small steps and visual support.
    • Pupils can appear restless, wander aimlessly, have a tendency to fiddle and play with objects.Impulsiveness Inconsistency

Family Resources

Net buddy- holiday information pack

Website: 
http://www.netbuddy.org.uk/info-packs/holidays/
Description

Net buddy is a great website- full of ideas, tips and specific information.

They have prepared a great Holiday factsheet that has a very comprehensive list of holidays for students who have special needs.

Neurofibromatosis family support group and forum

Website: 
http://www.mdjunction.com/neurofibromatosis
Description

Family support group with live forum where parents can communicate together.

Neurofibromatosis Type 1 - A guide for families

Website: 
http://www.nfauk.org/
Description

This useful guide would be informative for families, school staff, friends etc.

From the front page -> click on 'Downloads' -> 'NF1 - A guide for families'

Outreach Services

Newbridge Outreach Service

Phone: 
0208 503 8773
Email: 
.(JavaScript must be enabled to view this email address)
Website: 
http://www.redbridgeserc.org
Description

Newbridge Outreach Service provides support to pupils with a range of learning, medical and physical difficulties.

http://www.newbridge.redbridge.sch.uk/introduction2

  • physical disability
  • physical disability with associated learning/communication difficulties
  • dyspraxia and related specific learning difficulties
  • perceptual difficulties
  • fine and gross motor skill development
  • difficulties with handwriting and alternative forms of recording.

Support is provided by

  • providing assessments
  • setting targets for learning / writing individual programmes
  • modify curriculum content and delivery
  • identify and use specialist resources
  • helping to provide support and advice to parents
  • delivering INSET for all staff, other agencies and parents

Request for support should come from the school the pupil is attending or another Agency involved.

Occupational Therapy

Phone: 
020 8924 6111
Website: 
http://www.redbridge.gov.uk/
Description

The Occupational Therapy Team are now based at Redbridge Child Development Centre (0 -19yrs), previously known as The Kenwood Centre in Barkingside.

Physiotherapy

Phone: 
0181 924 6113
Website: 
http://www.redbridge.gov.uk/
Description

Based at Redbridge Child Development Centre  (0 - 19yrs), previously known as Kenwood Centre.