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Neurofibromatosis Support Downloads

Neurofibromatosis Support Downloads

Here we have lots of documents that will benefit anyone looking to learn more about NF1 or NF2. Please keep scrolling down the page to find NF1 Downloads, and after that, NF2 Downloads.

NF1 Support Documents

The Doctor Says you Have Neurofibromatosis

This is a simple easy read guide to NF1

Polly's Best Friend

A short story for young girls to help them better understand their condition.

The Winning Goal

A short story for young boys to help them better understand their condition.

Additional Notes For Teachers: Children with NF1

This information sheet will help further aid teachers in providing the best possible support for students with NF1. This document touches upon how a students learning, concentration, memory, co-ordination, speech, reading, writing and calculating may all be affected as a result of NF1 and what a teacher can do to help.

Neurofibromatosis Type 1: Information for Teachers

This is a further document to help support teachers. It delves into problems that could occur in school, this includes a number of hypothetical scenarios and how the teacher can act. The paper also briefly delves into the legal reasons behind what a teacher must do to help and provide support to a student with NF1 (Equality Act 2010)

Summary of Learning Dfficulties that Affect some Children with NF1

Concentration, Co-ordination, Memory, Speech, Processing and Sequencing, Organisation, and Social and Behaviour Patterns are all briefly explained.

My Child has Neurofibromatosis Type 1. What should I tell the Teacher?

This information sheet is designed to assist and support parents in telling a school and teacher what they need to know about their child's NF1

Talking with Children about Neurofibromatosis

This information sheet is designed to help support parents in how to tell their child about their NF. There is no right or wrong way to do it but the document offers some possible ideas about what may be done. The importance of letting a child know about their NF from a young age is also discussed.

The Child with NF1: Behaviour Difficulties

This document discusses some of the behaviour difficulties that may arise in a child with NF1. This then further explains the steps that you as a parent can take in terms of combatting this behaviour while ultimately reinforcing good behaviour.

The Child With NF1: A Guide For Parents

This document contains a lot of useful information for parents to help them better understand their child's NF. Within the document it explains why a child might have NF, both the health and learning complications that may arise and what check ups a child will need once diagnosed.

A Guide for Health Care Proffesionals

As NF is quite uncommon and is not always recognised or commonly dealt with by healthcare professionals, this document was created to help assist proffessionals in better understanding a childs NF. This includes diagnosis. genetic implications, management, and the complications surrounding neurofibromatosis.

Developmental Co-ordination Disorder Dyspraxia

This information sheet touches upon the gross motor and fine motor movement difficulties associated with dyspraxia and the complications that may arise as a result of this disorder

Neurofibromatosis Type 1 A Guide For Adults and Families

This document contains a more detailed scientific explanation about NF1 designed for adults and families. It looks at the complications that arise as a result of NF1, how it is developed, NF1 and pregnancy etc. It is a document that should support any adult in any decisions and understanding regarding their NF1.

The Role of the NF Specialist Advisor

This sheet briefly explains the work and support that our NF specialists provide, how to contact them and the area within the UK that they cover.

Information about localised, segmental or mosaic Neurofibromatosis type 1 (NF1)

This information sheet explains why a segmental NF1 may occur, the risks of passing it on to children and planning a pregnancy with the condition. The paper also discusses the necessary health checks that should be in place when diagnosed with segmental NF1.

Bone Changes in Neurofibromatosis Type 1

This information sheet describes the bone changes associated with NF1 including scoliosis, congenital pseudarthrosis and disorders of bone growth. Within this document each condition is explained in terms of what it is, how it is diagnosed, what risks and symptoms are associated with each disorder and how it is treated.

Pain Management

Within this download you will find explanations behind the causes of pain and the treatment available to reduce pain. The document also delves into the psychological aspect behind pain and you may be better able to control it.

Scans in Neurofibromatosis

This document describes each of the different sort of scans that may be utilised on a patient with NF1 e.g. ultrasound. The information sheet explains what each scan is, what occurs when undergoing the scan and why a particular scan is used.

Research Projects and Clinical Trials: Our Role

This information sheet talks about the kind of research we support and the importance behind it. The document also describes the general basis behind both clinical trials and quality of life studies and explains who is eligible to take part in such research.

NF2 Support Documents

Communication and NF2

This fact sheet will help you to better understand how to communicate with someone who has NF2 by overcoming their difficulties such as hearing loss, decreased concentration levels etc. as a result of NF2

NF2 Coping with Fatigue

A simple information sheet offering some ideas on how to cope with fatigue as a result of NF2.

Employment and Neurofibromatosis

This information sheet discusses your rights as an employee with NF2 (The Equality Act 2010), what you should tell your employer regarding your NF and who can help find work that is suitable to you.

Hearing Link's Residential Programme for NF2

This sheet tells you about a national organisation that runs a programme that helps people with NF2 deal with their hearing loss.

The Hearing Therapist

This download discusses the role that hearing therapists can play in supporting your and how you can find your nearest hearing therapist.

NF2 and Help with Speech Difficulties

This information sheet discusses the two types of speech difficulties associated with NF2 while offering some helpful tips on how to make your speech clearer for a listener.

Information about Mosaic Neurofibromatosis type 2

This document is solely based around mosaic neurofibromatosis. The sheet explains what it is, what it means, why it occurs, how it is diagnosed and the significance behind it.

Neurofibromatosis Type 2: An introduction for Patients

This a brief document summarising Neurofibromatosis Type 2 for diagnosed patients. The leaflet talks about the causes, affects, treatments and hearing rehabilitation all solely surrounding NF2.

NF2 and employment

This document is aimed more towards the employer than the employee and discusses what an employer should do to cater to the needs of any employee with NF2.

Pain Management

Within this download you will find explanations behind the causes of pain and the treatment available to reduce pain. The document also delves into the psychological aspect behind pain and you may be better able to control it. (Same as in NF1 section)

Radiosurgery and other Radiation Treatments

This document explains the terms that may be encountered in researching radiation treatments for NF2. It covers both vestibular schwannomas meningiomas as the commonest tumours in NF2 that are referred for treatment. It addresses commonly raised concerns about radiation treatments in the context of NF2.

Research Projects and Clinical Trials

This information sheet talks about the kind of research we support and the importance behind it. The document also describes the general basis behind both clinical trials and quality of life studies and explains who is eligible to take part in such research. (Same as in NF1 section)

Scans in Neurofibromatosis

This document describes each of the different sort of scans that may be utilised on a patient with NF1 e.g. ultrasound. The information sheet explains what each scan is, what occurs when undergoing the scan and why a particular scan is used. (Same as in NF1 section)

The Auditory Brainstem Implant

This document explains what an ABI is, the need for one, how it works, the effectiveness of getting an ABI and the importance of getting an MRI once a year with one.

The Role of the NF Specialist Advisor

This sheet briefly explains the work and support that our NF specialists provide, how to contact them and the area within the UK that they cover. (Same as in NF1 section)

Tinnitus

This information sheet explains what tinnitus is, what causes tinnitus and how to manage it.

Understanding Balance in NF2

This download initially explains some of the core concepts surrounding balance before discussing some of the balance difficulties that arise with NF2. It then explains what you can do to combat these difficulties while offering a number of balance exercises to help improve balance with some day to day tips that can be utilised to help prevent you from losing your balance

Vestibular Schwannoma

This fact sheet is intended to give a possible explanation for symptoms you might experience as a result of having vestibular Schwannomas (formerly called acoustic neuroma)