Dialog Box

Children's Tumour Foundation

FAQS


GENERAL QUESTIONS ABOUT NF

How do I say Neurofibromatosis?

It is pronounced nyoo-roh-fayi-broh-mut-oh-sis. It is a really long and complicated word to say, so we refer to it as NF.

What is Neurofibromatosis?

It is a group of three conditions caused by changes in our genes (the recipes that our bodies use) which all cause mostly non-cancerous tumours to grow on nerves throughout the body. 

Read more in What is NF?

Is NF known by any other names?

NF1 was named after Friedrich von Recklinghausen, a German pathologist, who first described neurofibromas in 1882. NF1 has until recently been referred to as von Recklinghausen’s disease. It has also been referred to as Peripheral NF.

NF2 has also previously been referred to as bilateral acoustic neurofibromatosis or central neurofibromatosis.

Schwannomatosis has only recently been separated as its own condition from NF2 and occasionally is referred to as NF3.

How common is NF?

All three forms of NF are classified as “rare diseases”. 

NF1 is the most common neurological condition caused by a single gene occurring in 1 in every 2,500 children born. 

NF2 and Schwannomatosis are much rarer, affecting 1 in every 25,000 - 40,000 people and an estimated 1 in every 40,000 people respectively.

Is NF Contagious?

No! You cannot catch NF from someone else. NF is something you are born with.

Is there a cure?

Currently, there is no cure for any of the forms of NF, and limited treatment options are available. Those that are available are specific to individual or groups of symptoms.

Is NF a disability?

No. A diagnosis of NF is not considered a disability or illness. Many people with this condition live healthy, long and fulfilling lives. However, some people do experience complications associated with NF which may cause disability.

Is there any financial or government support available to help?

Yes – for some people. Access to financial support through Centrelink and access to the National Disability Insurance Scheme (NDIS) and other community organisations will depend on your individual circumstances. These organisations adhere to strict eligibility guidelines that not everyone affected by NF will meet. 

For a personalised discussion about applying for supports and services contact our Support Team.

Can you help me fundraise to cover my medical expenses?

No. Excellent medical care and services are provided in Australia through the Medicare system at no cost to citizens and residents.

How do you get NF?

NF is caused by a change in your genes. These are the instructions that make all the ingredients that make you who you are. We all have two copies of every gene, one from mum and one from dad. To have NF we only need one changed or faulty copy of the NF gene. 

Head to What causes NF? For more information.

So, is NF always inherited then?

No – NF1 and NF2 are just as often a spontaneous change as it is inherited from a parent. Schwannomatosis is in fact more often spontaneous than inherited (85%).

I have NF, what are the chances my child will have it?

Regardless of whether you are the first in your family to have NF or it has been around for a generation or two, each time you conceive there is a 50% chance that your potential child will have NF. That is because you pass on only one of your two copies of the NF gene and only one of them has the fault or change that causes NF.

Can NF1 turn into NF2 or Schwannomatosis or vice versa?

No. Each form of NF is its own distinct condition. Once a gene change has occurred each time it is passed on it will be the same change and the same condition though symptoms will vary.

What about this gene editing technology I’ve heard so much about?

Gene editing or gene therapy is the replacement or insertion of a gene in the cells of a person. In principle gene editing has a lot of potential, but there’s still a long way to go before it can be considered for use to treat or even cure NF and other medical conditions. This is because along with needing to iron out some of the scientific challenges like what vector to use and how exactly the therapy would be delivered there are ethical, political as well as scientific or medical issues that have not yet been addressed. 

For more detail read the Centre for Genetics Education FACTSHEET 23: GENE THERAPY

How can I help?

There are lots of ways you can get involved! From hitting the Donate button to organising your very own community fundraiser, or even writing to your local Member of Parliament, you’ll find lots of ways to get involved here.

How do I find out more?

Please read through the other sections on this website (especially Living with NF). The CTF Support Team is available to talk you through any of the information on this website and help with other questions you might have. They can also provide you with additional resources or assist you with finding relevant specialists in your area. Please contact them on 02 9713 6111 or email support@ctf.org.au

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