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Support for Parents
of Children with NF2

Individuals diagnosed with NF2 face challenges on a day to day basis. This page provides information and resources to help parents to support the needs of their children.

Why does my child have NF2?

NF2 may be passed on from parent to child at the time of conception, or it may start in a family with no previous history of the disorder. A person who has NF2 has a 50% (or 1 in 2) chance of passing on the condition to each of his/her children. However, if your child is the first person in the family to be affected, the risk can be lower than that. When people are first diagnosed, they are referred to a Clinical Geneticist or Genetic Counsellor to discuss the genetic risk.

Pregnancy 

It is not usually possible to offer tests in pregnancy but couples considering this need to be referred to a genetic centre to discuss this with a genetic doctor and counsellor before contemplating a pregnancy. The doctor and/or counsellor will discuss the condition, the risks and the options available, so that the couple has all the information they need to make a decision. 

School

Teachers can visit our Support for Teachers page. Parents, please feel free to visit this page too. 

Bullying 

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

A parent knows their child best and will know if something is wrong. Some behaviours to look out for if you suspect your 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●    being nervous, losing confidence, or becoming distressed and withdrawn

Social Media & Cyber Bullying

Social Media, and the Internet have become an integral part of modern life, although these tools can be useful and fun, it can be difficult to protect your children online. 

Signs of cyber bullying include:
●    being withdrawn or upset after texting or being online
●    being unwilling to talk about what they're doing online or on their phone
●    spending much more or much less time texting or online
●    being nervous, losing confidence, or becoming distressed and withdrawn
●    many new phone numbers, texts or email addresses show up on their phone, laptop or tablet
  

How To Help

Knowing or suspecting that your child is being bullied can be very upsetting, but there's lots you can do to help tackle the problem.

After talking to your child about the issues they are facing, it is important to notify your child’s school.  All schools are required by law to have an anti-bullying policy, and you should discuss the best plan of action to tackle the bullying with your child’s teachers.  

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Some helpful information and resources