Neurofibromatosis type 2~NF2 Awareness

[morguebabe]

Great video! I have NF 1.

[angelste75]

My Little Brother ageed 29 was tragically taken from us due to Neurofibromatosis in 2008, My farther, sister and 2 3 yearold nephew all have it.. I wann No Y i Didnt Contract it.. Dose It Skip Generations?

[JaimeC729]

@angelste75 Hi Angel, I am so sorry for your loss. My mom passed away from NF2 when she was 35 in 1985, I was almost 9 years old when she died. NF2 does NOT skip generations, however, with each pregnancy, there is a 50/50 chance of passing the gene. It's a dominant gene, so if it was passed, you will have it. Genes come in pairs, so you have one gene from mom, and one gene from dad. Your mom had 2 normal genes, and your Dad has the mutated gene on chromosome 22 which causes NF and the ...

[JaimeC729]

@angelste75 And the also had the normal gene. When you were conceived, and got one gene from each of your parents, your father must have passed to you the non affected normal gene. Unfortunately he passed the mutated gene to your siblings. It's a 50/50 chance per pregnancy. Do you follow all that?

[mackieramos33]

Hi, name is Maclovia (mackie) for short. I am 33 years old and have NF2. i have 2 sons a 14year old and a 9 year old. In Nov, 2008 i had a large tummor on my right side in neck, i was growing since 1997. I have multiple tumors growing all over my body, they are tinny and some are big. I have had many people look at me and point and talk they would not not even wait for me to leave they would right infront of me. My now ex husbad did not want to be seen with me.

[SuperBrown65]

I have NF2 and I found out at 16 when I also found out I had a brain tumor that same day. I lost my hearing, feeling on the right side of my face, and it will be a long road the rest of my life. I have to have head and spine mri's every 8 months.

[JaimeC729]

@SuperBrown65 Did you know about the NF2crew? It's an online support group. Go to NF2crew.org to find us :) Best of luck to you

[JaimeC729]

Thanks hopeful! Sunday I am having a Poker/Benefit to raise money to help fund research. All proceeds are going to NF Inc! I am expecting a huge turnout!

[hopeful1964]

Thanks so much from across the globe, jamie. I am 45 and have nf2. I am so happy to know there is effort from patients like us to promote NF awareness. Your video is helpful to everyone.

[JaimeC729]

@hopeful1964 Thanks so much! I hope it helps to raise awareness so something can be done. Best of luck to you!! xo

[GoGreenForGood]

I just found out that my little 6 year old brother has NF2 so I'm organizing a walk for the cause in my hometown because the nearest walk for us is like 10 hours away. But your video was very inspiring! Good luck! And keep fighting!

[JaimeC729]

@GoGreenForGood Best of luck to you and your family. I lost my mom when I was only almost 9, and I found out one year later that I had it as well. We are fighters. Stay strong and never give up! xo

[michellejesberg]

Well done on the video Jaime. Gee its so sad.....lets pray for a cure for us

[JaimeC729]

@michellejesberg I pray every day! Best of luck to you xoxo

[video4yourtube]

I am a male 33 yrs old living in Canada.Have a child 6 yrs old, but now divorce. Im deaf with 1 eye fonctional and 1 hand working. My life is very hard with a lot people in my family and friend to criticism me. They affraid my tumor on the head. Due my disability, they think im idiot or something like that. Join me in my group in facebook. "Neurofibromatosis type 2 (international) NF2" and "My spine & spinal cord from neurofibromatosis type 2"

[JaimeC729]

@video4yourtube I too have one functioning eye. People do not realize that locked in the body that doesn't work right, is still the same person with the same brain and feelings. People can be cruel. It isn't until you have to face something like this, that you become more understanding and less judgmental of others. Stay strong in your fight and know that you are not alone xoxo

[JaimeC729]

Hi!

I am Jaime, I made this movie, I also am 33 and have Nf2, and have one functioning eye. You can find us at NF2Crew.org

[hayleypetamarrs]

this is a great videoi i have nf1 i hgope one day they will find a cure for us <3

[JaimeC729]

@hayleypetamarrs I hope so too! I feel like it's almost our time for a cure, hopefully 2011 will be good to us!

[oXdanceBABE30Xo]

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[JaimeC729]

@oXdanceBABE30Xo  xoxoxoxox lil niece <3

[oXdanceBABE30Xo]

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[oXdanceBABE30Xo]

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