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NF for Teens

SOME Things you may have missed while you were busy being a kid...

As a teenager, you are probably starting to ask a lot of questions about your NF. You have greater access to the internet, and some of the information you can find may feel overwhelming and scary.

So, we’ve compiled answers to the “Who, What, Where, When, Why and How” questions you may have.

NF is a genetic condition that causes tumours to grow on the nerve cells throughout the body.

It consists of three distinct conditions; Neurofibromatosis Type 1, Neurofibromatosis Type 2 and Schwannomatosis.

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NF is caused by a change in your genes. We can think of genes as being the chemical instructions that tell our cells (our body’s building blocks) what to do.

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.

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NF does not discriminate. It can affect anyone regardless of age, ethnicity, gender or family history and causes tumours to grow around the body’s nerve cells. We have built an amazing community of NF Heroes and you can read their stories here.

READ THEIR STORIES

NF is more common than you might think. NF1 is the most commonly inherited neurological genetic condition. It affects 1 in every 2,500 people, while NF2 and Schwannomatosis are much rarer. NF2 affects 1 in 25,000-40,000 people and Schwannomatosis 1 in every 40,000 people.

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You’re probably experiencing a lot of changes in your body, and it can be quite a confusing time. So, it is important to figure out what’s normal and what’s not.

As always, it’s better to err on the side of caution. Scroll down to the next section to get some tips about when to talk to your parents or your doctor if you’re unsure.

No two cases of NF are the same, which means that the way NF affects you will be different from anyone else. For many, the most worrying part of NF is the impact on physical appearance. You may have café-au-lait marks, freckling, neurofibromas and/or bone problems. There are some treatment options that may alleviate the physical symptoms of NF.

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When to look up from your phone and talk to your parents about changes in your body

You’ve probably reached the point where talking to your parents about the ins and outs of your personal life is off-limits. BUT it is important to keep them in the know about changes in your body that are NF related.

The specific things you will need to think about as you head through high school and your teenage years will differ depending on whether you have NF1 or NF2. Let’s break it down!

If you experience any of the following changes, start by letting your parents know or get in touch with your doctor.

NF1	NF2
An increase in size of an NF tumour A change in texture of an NF tumour Itching in one area, or everywhere Vision changes Numbness or tingling that doesn’t stop for a couple of days or keeps coming back If you have any questions about your NF	New and ongoing pain or pain that keeps coming back Tingling, numbness, weakness A change in vision A change in hearing Any other change in function you are concerned about If you have any questions about your NF

Not sure whether to be concerned? It’s better to err on the side of caution. Talk to your parents if you’re unsure or contact your doctor.

What to do when you experience bullying.

No one can make you feel inferior without your consent."

Eleanor Roosevelt, 1941

Friends and classmates might have questions about your condition, just as you may have questions about why someone looks different. Other kids might make rude comments or tease you because they don’t understand your condition. By facing it head on and owning what makes you standout, there is a good chance it will help you to fit in.

What’s important to remember is you can’t control the way people act, but you can control the way you react! You may feel hurt and upset over their comments, but bullies get the most satisfaction from seeing you get annoyed or upset by what they say. It fills them up because they think blowing someone else’s candle out will make theirs shine brighter. We all know that it does not.

Let your smile change the world, but don’t let the world change your smile.

We’ve compiled a list of comments or questions you might encounter and some comebacks to help you respond but remember, showing respect to people who may not deserve it is more of a reflection of your own character than theirs.

Bully Message

Response

“Why do you have all those spots over you?!”

“It’s no big deal, they’re just birthmarks.”

“Didn’t you know? I’m part dalmatian! Just kidding, they’re birth marks or café-au-lait spots.”

“I don’t want to catch whatever it is that YOU have!”

“Don’t stress! It’s not contagious.”

“Wow, that’s rude. I have NF, it’s not contagious.”

Bully Message

Response

“Why do you have all those spots over you?!”

“It’s no big deal, they’re just birthmarks.”

“Didn’t you know? I’m part Dalmatian! Just kidding, they’re birth marks or café-au-lait spots.”

“I don’t want to catch whatever it is that YOU have!”

“Don’t stress! It’s not contagious.”

“Wow, that’s rude. I have NF, it’s not contagious.”

NF Hero Edward has been through it all. Edward experienced bullying from Grade 2 and found school an extremely lonely time. He has been through the lowest of lows, contemplating whether his life was worth living, all the way to a having a wonderfully positive “brand-new” outlook on life.

“I know now that I am here for a reason. Maybe it is to do genetic research into Neurofibromatosis? I want to map the genome and match it to the different clinical manifestations of NF. It might be possible to then engineer proteins to prevent NF tumours. Maybe it is to become a great Dad and husband. Maybe it is to travel and have adventures around the world. Maybe it is all of these and more."

READ EDWARD'S FULL STORY

Remember, there are always services available if you need help right now.

LIFELINE BEYOND BLUE HEADSPACE REACHOUT

Making it easier to stay on top of school

School is hard enough. Managing your schoolwork on top of a genetic condition that requires constant monitoring is beyond hard! We get it!

Here’s some strategies that may help you stay on top of your schoolwork.

A clean desk is a clean mind

Did you know it is scientifically proven that a clean desk equals greater productivity! Having clutter in a space where you are trying to work creates negative feelings and stress (the last thing you want!).

Here's what you can do.

Find your space – claim a space of your own that is designated for schoolwork. You may have a desk in your room or set yourself up each afternoon at the dinner table and make it your space for a few hours.
Eliminate what’s not needed – look around and figure out what you need for THAT assignment at THAT time.
Make a TO-DO List – decide what you are working on, figure out what you need for that project and remove the rest.
Get rid of distractions – yes, this means your phone (we’re sorry).
Schedule breaks – this means phone time!

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Talk to your teachers - remember they are people too

As you enter high school, you go from having one teacher to having lots of them! This can be a scary and intimidating process, but it’s important to remember you have been attending school for over six years and have probably figured out what works for you and what doesn’t.

Share what you know about how you learn with your new teachers. Try doing this without your parents there. This is a great first step in developing independence!
Try and organise a meeting with each of your teachers during recess or lunch at the beginning of the year to let them know what works best for you. This shows independence, maturity and will ultimately benefit you and your teachers in the long run.
Remember, teachers are there to help you learn! Work together to figure out how you can achieve this!

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Knowledge is Power

Many of your teachers have probably never heard of NF! (Why don’t you ask them?) Now it’s time for you to teach them. Provide them with some insight into what it’s like to live in your world. We have a bunch of resources available to help teachers understand NF and how best to support your learning.

Contact our Support Team to find out more.

OFF YOUR L’s AND INTO THE DRIVERS SEAT! IT’S TIME TO TAKE CONTROL OF YOUR OWN HEALTH.

“I’m not a kid anymore!”. You’ve probably said it to your parents, but the reality of this means many changes for your health and the management of it.

You’re getting to an age where you will no longer be considered a “paediatric” patient, and you will have to integrate into the adult hospital system. This may seem quite daunting at first, but taking small steps toward independence is a GOOD THING!

It’s time to take control of your own health. Here’s a few ways you can start:

Organise your own Medicare card

Once you turn 15, you can apply for your own Medicare card. This is a great first step towards taking control of your health. Head to Services Australia to find out how.

Link with your local transitioning service

Most paediatric hospitals will have a Transition Service. Once you turn 16, you are normally able to join up, so remember to ask about this next time you are at a routine check-up.

Start making your own appointments

Picking up the phone and speaking to someone you don’t know can be scary! But it’s something we all have to do, eventually.

Start going to your own appointments

You’ve made the appointment, now it’s time to go. Try going on your own. Ask your mum or dad to stay in the waiting room. They can always come in afterwards if you feel you need them! Make sure you ask questions! You’re taking control of your health, so you need to understand what’s going on. If you are not sure what something means – ASK!

Finding the ONE!

We’re talking about GPs of course! Finding the right GP can be hard. You may have been seeing the same GP since you were a child, but that doesn’t mean you have to be stuck with them. Finding a GP you are comfortable with, who has knowledge about your NF, is willing to listen and learn is SUPER important! Look around, do some research and talk to the NF community to find the ONE!

Keep track of changes

NF requires monitoring. And as you get older it’s up to you to monitor changes in your condition. You could use your phone or the CTF’s Health Management Kit to easily keep track of changes. Do what works for you!

Don’t stress the ’rents, keep them in the loop!

Your parents care, even if you don’t. Keep them updated. You don’t have to tell them everything but try and keep them in the loop about the important stuff.

Slide into our DMs!

We want to hear from you! Join our CTF Youth Group and learn about our monthly youth chats! This is a great way to meet others your age and form new connections. Or simply send us a message, we’re always here to talk!

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Become an “i-NF-luencer”!

Instagram isn’t just for selfies and fashion shots. It can be a place for self-expression and a great source of inspiration.

Many of our NF Heroes feel invisible and alone. But let’s change that! Now is your time to shine!

We want to use Instagram to do good! So, we’re on the lookout for iNFluencers!
You guessed it - NF influencers!

Let us follow and share your NF journey with our community. This is a great way to share and celebrate your story with the world, become a source of inspiration for other NF Heroes, raise awareness of NF, and normalise the condition – help create a more accepting future for everyone.

Use the hashtag #conquernf and tag @ctfaustralia so we can follow your journey!

Need some help starting your page? Give us a call on 02 9713 6111 or DM us @ctfaustralia.

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