Funny Lumps supports children with Neurofibromatosis and their families living in Scotland.

Neurofibromatosis (NF) is the most common but least known about genetic condition affecting 1:3000 births. It can cause problems with multiple systems in the human body. Nervous system, skin, eyes, skeleton, endocrine and circulatory system. Brain tumours, dermal tumours, optic giloma, scoliosis, pseudoarthrosis ( usually resulting in amputation), large disfiguring plexiform tumours and kidney problems are among some.

However, the most common and challenging complications can be the learning difficulties and behavioural problems children with NF face on a daily basis. As many as 66% of people will have some form of learning problem as many as 1:4 will display autistic tendencies.

Many will experience development phonological dyslexia. They will find it difficult to recognise strange words and rely on word recognition based on appearance of words and spelling causing huge problems with reading and writing.

Reading and language problems make it difficult to acquire numeracy skills and short term memory problems make it difficult to remember basic number facts. 

Children with NF can experience difficulties with:

• Short term memory
• Attention skills
• Visual perception
• Visual spatial skills
• Fine and gross  motor skills
• Reading
• Maths
• Written expression
• Behaviours
• Anxiety and depression are common in children with NF
• Social skills
• Psychosocial: within a family the child with NF is likely to be less competent in many skills than the sibling who does not have NF
• Social problems are common - difficulty being accepted by other children at school and in the community
• Language dysfunction
  

All these problems are further compounded when the parent also has NF and experiences learning problems. These parents find it difficult explaining to teaching staff why their child is displaying "bad behaviour" and not keeping pace with their peers.

Every child with NF is different and at Funny Lumps they believe that each child should have a tailored prescription of information to assist the teachers in helping the child achieve their full potential.

The Education advisor, who writes all there educational material, is a chartered Teacher specialising in NF and Autism. These materials consist of specific information sheets on the various learning difficulties a child might face. Help sheets for teaching staff, learning support staff, nursery nurses etc. School diaries specifically designed for children who have both learning and medical needs, visual timetables, behaviour tips, booklets for the parents on how best to help their child at school, booklets for the child on having NF and a booklet which gives parents the chance to discuss how their child is feeling about the challenges faced on a daily basis.

Funny Lumps organise family events where children can get together and realise they are not the only ones who have this condition and the rest of the family get the chance to meet others in the same situation and who understand and can support one another.