Support for Teenagers
with NF2
While the problems in NF2 can be worrying, treatments are improving and support is available through the various doctors and therapists who you may be in contact with.
NF2 is a very rare genetic condition that you’re born with, but people don’t notice the signs that they have it until they’re teenagers or older. Doctors will usually need to do an MRI scan to tell whether you have it.
Like NF1, it can be passed on from parents or it can start in a family by chance. And again, like NF1, someone with NF2 has a 1 in 2 chance of passing it to their children.
NF2 causes lumps to grow, usually in your brain and spine. These lumps aren’t cancer, but they can cause problems with your hearing and the way you move because of the pressure they put on the nerves in your body.
Unlike NF1, virtually everyone with NF2 will need operations or other treatments for the lumps in their brain or spine at some time. A hallmark of NF2, is that tumours may affect a person’s hearing. It’s understandable if this worries you; but it's also important to remember NF2 affects lots of people differently.
It’s also important to remember that the Nerve Tumour UK helpline is here to help with your concerns as well. You can find helpline contact details at this page.
For support with a teenager’s education please visit our "iNForm" pages
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