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Support for Teachers (NF2)

Working with children and teens who have nerve tumours can be a worry for teachers. We are here to help you care better for those with NF2 so you can provide them with the best possible education.

What is NF2-related-Schwannomatosis (NF2)?

NF2 is a rare genetic condition caused by a “misspelling” on chromosome 22. NF2 occurs in 1 in 30,000 of the population. 

NF2 is different to NF1 because people will need operations or other treatments for brain or spinal cord tumours. Also, people will develop tumours typically in the brain and spine. The hallmark of NF2 is the development of benign tumours called vestibular schwannomas (formerly called Acoustic Neuromas) which grow on both hearing nerves. These tumours can cause hearing loss, deafness, and mobility problems due to the pressure exerted on key nerves.

NF2 can be passed on from parent to child at the time of conception, a person who has NF2 has a 50% (or 1 in 2) chance of passing on the condition to his/ her children. 

What problems can occur in school?

Most children with NF2 can join in with the normal range of school activities. The exceptions are children who are limited by a specific health problem such as tumours that bear potential risk from injury. Even this can be accommodated with planning and parental advice. Other problems that may arise include: 

  • Bullying
  • Behavioural difficulties eg. loneliness and lack of confidence
  • Social communications problems because of their loss of hearing and speech difficulties.

Should I talk to the class about NF2?

It is important to discuss this first with the child’s parents and be guided by them. Where appropriate, dependent on age/maturity this should also include the views of the child. 

It is important to find out from parents what their child knows and understands about their NF2. Parents will expect this information to remain confidential unless their permission is given to share it.

Other children in the class may be curious so the child is not singled out, think about a general discussion at circle time around the things that make us the same and the things that make us different. This will provide an opportunity to explore general themes without specific reference to NF2. It can help the child with NF2 if they have a simple ready answer (such as “it's just something I was born with”) to questions to do with their hearing or speech. 

"Helping them to develop the skills to deal with these issues confidently is a challenge, but brings great rewards both for the child and their teachers."

– Jo Clements, SENCO

Social media & bullying

Some of the symptoms of NF2, such as tumours, deafness and a different way of speaking, can often make the children targets of bullying.

Some behaviours to look out for if you suspect a child may be being bullied include:

  • reluctance to go to school
  • being mysteriously ‘ill’ each morning, or skipping school
  • belongings getting “lost” or damaged
  • being nervous, losing confidence, or becoming distressed and withdrawn

Examples of how to help

When a child with NF2 joins your class, it will be helpful to talk with their parents at an early stage about what the diagnosis means for their child and to understand if there are any significant health problems that will impact on the school day. This will enable you to be clear about what support, if any, the child needs and to have a plan in place. 

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. At Nerve Tumours UK, we want to make sure you receive the best support, all of this information below will ensure that this is possible.

School Information pack

This pack helps the school’s professionals understand and support children with NF, helping them 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 Nerve Tumours UK’s Support Specialists.
If you would like to request a pack please email info@nervetumours.org.uk (All school pack requests must come from the school itself). 

Nerve Tumours UK Specialist Support

Nerve Tumours UK helps fund a team of Support Specialists in a number of regions across the United Kingdom. These specialists work to improve the lives of those affected by NF and provide crucial support to patients and families. 

National Helpline

Another service we work to maintain is our National Helpline. Open Mondays, Wednesdays and Fridays 9am - 5pm, if you need someone to talk to or some help getting to the right place. Call 07939 046 030 or email helpline@nervetumours.org.uk.

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Some helpful information and resources

Masterclasses in NF: Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome - Prof. Dr. Katharina Wimmer

Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome

Prof. Dr. Katharina Wimmer, Medical University of Innsbruck

Masterclasses in NF: Rare NF1-Associated Tumors in Adults - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: Rare NF1-Associated Tumors in Adults

Eric Legius, MD, PhD, University Hospital Leuven

Prof. Ellen Denayer, University Hospital Leuven

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis - Simon Freeman

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis

Simon Freeman, MPhil FRCS, Manchester Royal Infirmary and Salford Royal Hospital

Masterclasses in NF: NF1 Dermatological Manifestations - Pierre Wolkenstein, Laura Fertitta & Sirkku Peltonen

Masterclasses in NF: NF1 Dermatological Manifestations

Pierre Wolkenstein, MD, PhD, Hopital Henri-Mondor, Paris, France

Laura Fertitta, MD, Hôpital Universitaire Henri Mondor

Sirkku Peltonen, MD, PhD, University of Gothenberg, Sweden

Masterclasses in NF: Breast Cancer in NF1 - Gareth Evans

Masterclasses in NF: Breast Cancer in NF1

Gareth Evans, MD, University of Manchester, UK

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis - David Pang

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis

David Pang, MD, ChB. Guys and St Thomas' Hospital NHS Trust, London

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches - Said Farschtschi

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches

Said Farschtschi, MD, University Medical Center, Hamburg-Eppendorf, Germany

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis

Eric Legius, MD, PHD, University Hospital of Leuven, Belgium

Prof. Ellen Denayer, University Hospital of Leuven, Belgium

NF2 Working Together: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 2: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 1: from a tentative diagnosis and beyond

Understanding  the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

Masterclasses in NF: Surgery in NF2 - Michel Kalamarides & Andrew King

Masterclasses in NF: Surgery in NF2

Michel Kalamarides, MD, PhD, Hôpital Pitié-Salpêtrière, Paris, France

Prof Andrew King, MBBS FRCS FRCS(SN), Salford Royal Hospital, Manchester, United Kingdom. Member of the MAB of Nerve Tumours UK

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches - Shruti Garg, Andre Rietman

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches

Dr Shruti Garg, MBBS, MRCPsych, MMedSci, PhD, Royal Manchester Children’s Hospital, United Kingdom. Member of the MAB of Nerve Tumours UK

Andre Rietman, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis - Susie Henley, Thomas Pletschko & Verena Rosenmayr

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis

Susie Henley, DClinPsy, PhD, Guy’s and St Thomas’ NHS Foundation Trust, London UK

Thomas Pletschko, PhD, Medical University of Vienna, Austria

Verena Rosenmayr, Clinical Psychologist, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Pediatric Management - Rianne Oostenbrink

Masterclasses in NF: NF1 Pediatric Management

Rianne Oostenbrink, MD, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond - Amedeo Azizi

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond

Amedeo Azizi, MD, PhD, Head of the Paediatric Neurofibromatosis Program and Paediatric Neuro-Oncology Program, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Orthopedic Manifestations - Eric Legius and Christophe Glorion

Masterclasses in NF: NF1 Orthopedic Manifestations

Eric Legius, MD, PhD. Head of Clinical Genetics Department of the University Hospital Leuven, Belgium

Christophe Glorion, MD, PhD, Department of Paediatric Orthopedic and Traumatologic Surgery, Hopital Necker-Enfants Malades, Paris, France. 

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours - Rosalie Ferner and Viktor-Felix Mautner

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK

Viktor-Felix Mautner, MD, PhD. University Medical Centre in Hamburg-Eppendorf, Germany. Head of NF Outpatient Department

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas - Pierre Wolkenstein and Sirkku Peltonen

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas

Pierre Wolkenstein, MD, PhD. Hopital Henri-Mondor, Paris, France. Head of the Department of Dermatology

Sirkku Peltonen MD, PhD. University of Gothenberg, Sweden. Professor of Dermatology

INFER (International NF Educational Resources) is a series of online educational lectures for medical professionals by leading neurofibromatosis experts. The Masterclasses take place online approximately once a month, each on a different topic, and include real-time interaction between the expert presenter and the participants. The presentations are conducted in English, with real-time audio interpretation available in 6 additional languages: French, German, Italian, Portuguese, Russian, and Spanish. A recording of each INFER masterclass is then be made available online in each language for those who could not attend an event. INFER is an initiative of Children’s Tumor Foundation Europe, supported by an educational grant from AstraZeneca. https://ctfeurope.org/research/masterclasses-in-nf

BPNA Keynote Lecture - Prof Rosalie Ferner - Neurofibromatosis 1 in the 21st Century

‘Neurofibromatosis 1 in the 21st Century’

Keynote Lecture at the 48th British Paediatric Neurology Association Annual Scientific Meeting on 21st January 2022

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK