Neurofibromatosis Type 2 (NF2) - A 7 year old explains!

In honor of Neurofibromatosis Awareness Month, Caedan explains what NF2 is, how his Aunt Nissa lives with it, and what he does to help! Read below for transcriptio of video.

TRANSCRIPTION:
I’m here to tell you about NEURO FIBRO MATOSIS.
It is a hard word to say! Okay Cambria...Neuro...Fibro....Matosis. Good!!

You can also just call it NF. Well there are two types of NF - NF1 and NF2 but we are going to talk about this one right here. Yes, its NF2.

It is a progressive disease which means it keeps getting worse. And it never gets better. It causes tumors to grow on your nerval tissue, in your brain, your spinal cord and other places in your body.

This is my Aunt Nissa. She has NF2. She doesn’t just have NF2. She’s a doctor, a daughter, a sister, an aunt (not like an insect), and a friend. She is very strong and fights NF. That is why I want everyone to know about NF 1 and 2.

I’m going to tell you some facts on NF2.
Fact 1 - it is typically diagnosed around 18 years of age
Fact 2 - Usually people start not being able to hear very well, and they may have ringing in their ear, or they could start to get dizzy
Number 3 - Next you have to have an MRI which is a big, giant camera. Then the doctor can figure out that you have NF2.
Fact number 4 - NF2 is a problem with chromosome 22, which is why NF2 Awareness Day is on May secondy-second.
Sometimes you get tumors on a special nerve called cranial nerve 8, This nerve affects your hearing and your movement. So that means, you can have a hard time hearing or you can also be deaf, which means you can’t hear anything or you can have a really hard time moving or not even more sometimes. These tumors can press on another special nerve called cranial nerve 7, which can make your face droop down like this. My Aunt Nissa this happened to her. Like that. See. OK. This can affect your speaking, swallowing, and even breathing. My Aunt Nissa she has to have a tube in her neck so the tumors can not press down too hard and so she can breathe.

These are some things to remember with someone with NF2
-They might have a hard time hearing you
-They might have a hard time speaking or they may speak really softly or they may not even speak at all.
-They may have a tube in their neck to help them breathing
-They might get dizzy or have a hard movement or they might not move at all
-Their sight may be really bad...or they might look...or they might not hear...see very well...or they might not see anything.
-They have lots of pain and headaches
-And they have a hard time eating and swallowing. If they swallow they can choke.

Let me tell you what I do.
-I love to write notes with Aunt Nissa. We have a special tablet that we can write notes to each other and back. It is really fun!
-My Aunt Nissa has a hard time hearing, but she can read lips. So I tap her on the shoulder so she can know what I am saying.
-I help my Aunt Nissa by holding her hand so she can walk because she gets a little dizzy and has a hard time moving.
-I know my Aunt Nissa has a lot of pain. So I give her gentle hugs and not bump her when I am jumping around.

Despite her NF, my Aunt Nissa loves lots of things.

-including seeing her friends (especially me!). Because you feel all alone when you have NF2 and it is a hard time to get to someone’s house because you have a hard time hearing, you have a hard time seeing and moving.
-She loves movies. She can put the words on the screen so she can see what everyone is saying.
-She likes reading books. And do you know, she can read in both English and Spanish? There is a big same with me and my Aunt Nissa, I like reading books too.
-My Aunt Nissa loves doing special things such as making cupcakes. I want to live next door so I can try them all out!

So, remember...Neurofibromatosis month is May. This is me...making you aware!


For more info on Neurofibromatosis, visit ctf.org, nfauk.org, and canyouhearus.co.uk

#endnf, #nissastrong

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  Neurofibromatosis Type 2