MTV: I Have Neurofibromatosis
“Follow the lives of three young individuals who fight against a disease that causes tumors to spread through the body.’”
This is Adgiant talking. Just watched the MTV Special Episode, “I Have NF” and I think it is fantastic. They didn’t try to sensationalize the disorder but instead tried to accurately portray, through the lives of three people, how NF has affected them and how they are dealing with it. Very positive. Very uplifting. Very you gotta watch it!
Here’s the link:
Tags: i have nf, Just Ask!, mtv, neurofibromatosis, reggiebibbs.com.reggie bibbs
April 13th, 2010 at 9:53 pm
Read the reviews:
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La_Flaka1 commented | 54 minutes ago
wow i feel rlly bad for them
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sgh
sgh commented | 1 hour ago
A huge thanks to MTV for highlighting NF 1 and NF 2. Hoping viewers will remember the depths of this disease and request funding and research when speaking to their political representatives. These are two very distinctly different diseases…but they both share in the need for medical research and medical funding.
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Tera
Tera commented | 2 hours ago
Thank you MTV and thank you Amber, Philip and Bekah for sharing your story. I have NF 1 and as anyone knows everyone’s case is different. It is nice to see some light shed on this disorder. Thank you for the kind words from those who watched the show who do not have NF now you can help us spread the word!
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Sal
Sal commented | 2 hours ago
I also have NF 1, and I am glad that MTV did a special on it, to inform people about NF. I would have added more information about what NF is though.
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adgiant
adgiant commented | 3 hours ago
What a wonderful show! Kudos to MTV for helping spread awareness of this debilitating disorder. I have many friends who have neurofibromatosis (NF) and I have to tell you people with NF are the most courageous people I know. Perhaps the most courageous is Reggie Bibbs. He lives in Houston, TX and he is severely affected. He is on a one-man mission to spread awareness of NF and to educate people about NF. If you are at all interested in learning about NF further, I recommend you visit his website, http://www.reggiebibbs.com
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Karen
Karen commented | 5 hours ago
I have NF Type I I am fully functional in my work, social life and family life. I feel bad for these young people. And their issues they have to go through. My husband and I are now considering looking towards having children. and Since NF is a genetic condition that is a 50.50 chance of passing down, we are considering other options. we would like to have a natural childbirth, but I would prefer to ensure that this genetic condition does not pass down to my future children. Do you know of any doctors or hospitals that are doing invetro fertilization for NF specifically? That is the few options we have right now at this moment. I have been tested for NF and have the specific gene count where my NF exists. Please let me know thanks very much
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lauriebiz86
lauriebiz86 commented | 5 hours ago
wow this is soo depressing just watching these young people suffer daily makes my problems seem like nothing at all
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Debby
Debby commented | 5 hours ago
This makes me really think about how much I complain about having to walk and sometimes wish I had a wheelchair. But to see that all Bekha wants to do is to be able to walk to class and live an independent life makes me grateful and makes me want to walk for myself and for her.
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Joy
Joy commented | 5 hours ago
Thank you MTV for airng this episode about NF. I am a 24 yr old girl, suffering from NF1, and I have only just started to understand my disease and accepting it. I have recently started to search for options regarding having children, as I am scared that my children will inherit my dieaseas. Even though I am not suffering to the extent as some other people with NF, I know the risks. My dream is that more people will learn about NF, and understand what we are going through, and now, because of you MTV, that dream will come true, Thank you!!!
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Heather
Heather commented | 5 hours ago
I’m a 16 year old girl who has Neurofibromatosis; Its bad for me because I have had doctors tell me type 1 and some have said type 2; I trust the one that said type 2 because he had studied the most about the disease; this has been the best true life show ever; this is life, not wanting everything in the world but wanting such a simple thing that everyday people take for granite; I wanted to cry when I saw this I wanted to turn it off after the first 10 minutes because is was so sad…): I hope the people on here get though everything perfectly<3
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WinterJoy89
WinterJoy89 commented | 5 hours ago
I am 2o years old and I have NF2. I am the first in my family to have it. Rather then lesions growing on my skin they grown on optic nerves, ear tubes, brain, and spinal cord. My lesions are binine and do not effect my everday life like they do for these 3 people. For that i am more then greatfull then words can say. The fear I have isnt for myself but, for my future chirldren. I hope that in the near future more people will know what NF is and it can be further researched with a helpful outcome.
Reply to this comment | Edit | Delete | Flag
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Dee
Dee commented | 6 hours ago
Thank you MTV! My daughter has NF1 and it helps us both to know there are others suffering the same symptoms. Her's are in her legs and spine – spreading over the years. Talking to others and being involved with the Children's Tumor Foundation has really helped us.
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Cindy
Cindy commented | 6 hours ago
I am so grateful to MTV for bringing this disease to peoples attention. I only wish MTV would have gave viewers the ctf.org website at the end so viewers could go to it for more information or learn ways to help. My son Winston is 5 years old and was diagnosed with NF at the age of 6 months. It saddens me when I heard these very brave teenagers say all they want is to be "normal". There are so many ways you can help to make a difference, please do something!!!
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Skylar
Skylar commented | 7 hours ago
i have nf ot as bad as they have it but i know how they feal
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Tammy
Tammy commented | 8 hours ago
HI MY NAME IS TAMMY .I'M 41. I HAVE NF TPYE 1 .MY THREE CHILDREN HAVE NF . I LOST MY RIGHT ARM AT THE AGE OF 3 . I HAVE 20 SURGENYS TO SAVE IT . BUT NO LUCK . I WATCH THE SHOW LAST NIGHT .AN I CRY AN I WAS TALK TO EACH OF THE THEM I WISH I COULD TALK WITH THEM OR WRITE TO THEM . I WOULD LOVE TO KNOW OTHER WITH THIS. I WANT TO GIVE THEM MY POINT OR TELL THEM MY STORY .PHILIP IS A HANDSOME YOUNG MAN I WENT THOUGHT WHAT HE IS AT SCHOOL . BEKHA SHE IS SO BEAUTIFUL . I CRY AND EVERYTIME I SAW THAT SHE WAS GOING TO FALL I HELP TO TRY TO CATCH HER . NOWING THAT I CAN'T I CRY MORE . AMBER SHE IS ALLSO BEAUITFUL . SO I HAD TO SAY THIS .I FEEL A BIG CONNETING WITH THEM . I LOVE TO HEAR MORE ABOUT THEM .
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Katherine
Katherine commented | 8 hours ago
Thank you for doing this show.
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Ann
Ann commented | 8 hours ago
I have NF type one. THANK YOU So much MTV for doing this. http://www.youtube.com/watch?v=RvqGraYY11k
Reply to this comment | Edit | Delete | Flag
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Tiffanie
Tiffanie commented | 9 hours ago
i missed it cause i was @ work when it came on, But watching now is inspiring in a way…
Reply to this comment | Edit | Delete | Flag
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clarinetplayer87
clarinetplayer87 commented | 9 hours ago
I am 22 years, I have NF 1. It is not as bad I have a tumor on the bottom of my big left toe, I have had two surgery's, but the tumor is branching off in so many directions, they can't get all of it. Because of it that foot is smaller than the right so that does make it hard to buy shoes. It has been hard to walk sometimes, because the toe cramps and hurts sometimes to the point I can't walk. I have learned to over come it and not let it stop me from what I like to do.
Reply to this comment | Edit | Delete | Flag
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Jocelyn
Jocelyn commented | 10 hours ago
im 20yrs old i got NF1 but its not as bad as this im thankful for that, i hate it :[ but my nf is only my baeuty marks the (brown spots) i did have tumors but i got them removed. i got spinal surgery n i came out fine, but seeing this episode made me much more stronger, and im the only one in my family, i dnt undertand why i got i but i had already accept it,,arch when speaking to their political representatives. These are two very distinctly different diseases…but they both share in the need for medical research and medical funding.
Reply to this comment | Edit | Delete | Flag
#
Tera
Tera commented | 2 hours ago
Thank you MTV and thank you Amber, Philip and Bekah for sharing your story. I have NF 1 and as anyone knows everyone's case is different. It is nice to see some light shed on this disorder. Thank you for the kind words from those who watched the show who do not have NF now you can help us spread the word!
Reply to this comment | Edit | Delete | Flag
#
Sal
Sal commented | 2 hours ago
I also have NF 1, and I am glad that MTV did a special on it, to inform people about NF. I would have added more information about what NF is though.
Reply to this comment | Edit | Delete | Flag
#
adgiant
adgiant commented | 3 hours ago
What a wonderful show! Kudos to MTV for helping spread awareness of this debilitating disorder. I have many friends who have neurofibromatosis (NF) and I have to tell you people with NF are the most courageous people I know. Perhaps the most courageous is Reggie Bibbs. He lives in Houston, TX and he is severely affected. He is on a one-man mission to spread awareness of NF and to educate people about NF. If you are at all interested in learning about NF further, I recommend you visit his website, http://www.reggiebibbs.com
Reply to this comment | Edit | Delete | Flag
#
Karen
Karen commented | 5 hours ago
I have NF Type I I am fully functional in my work, social life and family life. I feel bad for these young people. And their issues they have to go through. My husband and I are now considering looking towards having children. and Since NF is a genetic condition that is a 50.50 chance of passing down, we are considering other options. we would like to have a natural childbirth, but I would prefer to ensure that this genetic condition does not pass down to my future children. Do you know of any doctors or hospitals that are doing invetro fertilization for NF specifically? That is the few options we have right now at this moment. I have been tested for NF and have the specific gene count where my NF exists. Please let me know thanks very much
Reply to this comment | Edit | Delete | Flag
#
lauriebiz86
lauriebiz86 commented | 5 hours ago
wow this is soo depressing just watching these young people suffer daily makes my problems seem like nothing at all
Reply to this comment | Edit | Delete | Flag
#
Debby
Debby commented | 5 hours ago
This makes me really think about how much I complain about having to walk and sometimes wish I had a wheelchair. But to see that all Bekha wants to do is to be able to walk to class and live an independent life makes me grateful and makes me want to walk for myself and for her.
Reply to this comment | Edit | Delete | Flag
#
Joy
Joy commented | 5 hours ago
Thank you MTV for airng this episode about NF. I am a 24 yr old girl, suffering from NF1, and I have only just started to understand my disease and accepting it. I have recently started to search for options regarding having children, as I am scared that my children will inherit my dieaseas. Even though I am not suffering to the extent as some other people with NF, I know the risks. My dream is that more people will learn about NF, and understand what we are going through, and now, because of you MTV, that dream will come true, Thank you!!!
Reply to this comment | Edit | Delete | Flag
#
Heather
Heather commented | 5 hours ago
I'm a 16 year old girl who has Neurofibromatosis; Its bad for me because I have had doctors tell me type 1 and some have said type 2; I trust the one that said type 2 because he had studied the most about the disease; this has been the best true life show ever; this is life, not wanting everything in the world but wanting such a simple thing that everyday people take for granite; I wanted to cry when I saw this I wanted to turn it off after the first 10 minutes because is was so sad…): I hope the people on here get though everything perfectly<3
Reply to this comment | Edit | Delete | Flag
#
WinterJoy89
WinterJoy89 commented | 5 hours ago
I am 2o years old and I have NF2. I am the first in my family to have it. Rather then lesions growing on my skin they grown on optic nerves, ear tubes, brain, and spinal cord. My lesions are binine and do not effect my everday life like they do for these 3 people. For that i am more then greatfull then words can say. The fear I have isnt for myself but, for my future chirldren. I hope that in the near future more people will know what NF is and it can be further researched with a helpful outcome.
Reply to this comment | Edit | Delete | Flag
#
Dee
Dee commented | 6 hours ago
Thank you MTV! My daughter has NF1 and it helps us both to know there are others suffering the same symptoms. Her's are in her legs and spine – spreading over the years. Talking to others and being involved with the Children's Tumor Foundation has really helped us.
Reply to this comment | Edit | Delete | Flag
#
Cindy
Cindy commented | 6 hours ago
I am so grateful to MTV for bringing this disease to peoples attention. I only wish MTV would have gave viewers the ctf.org website at the end so viewers could go to it for more information or learn ways to help. My son Winston is 5 years old and was diagnosed with NF at the age of 6 months. It saddens me when I heard these very brave teenagers say all they want is to be "normal". There are so many ways you can help to make a difference, please do something!!!
Reply to this comment | Edit | Delete | Flag
#
Skylar
Skylar commented | 7 hours ago
i have nf ot as bad as they have it but i know how they feal
Reply to this comment | Edit | Delete | Flag
#
Tammy
Tammy commented | 8 hours ago
HI MY NAME IS TAMMY .I'M 41. I HAVE NF TPYE 1 .MY THREE CHILDREN HAVE NF . I LOST MY RIGHT ARM AT THE AGE OF 3 . I HAVE 20 SURGENYS TO SAVE IT . BUT NO LUCK . I WATCH THE SHOW LAST NIGHT .AN I CRY AN I WAS TALK TO EACH OF THE THEM I WISH I COULD TALK WITH THEM OR WRITE TO THEM . I WOULD LOVE TO KNOW OTHER WITH THIS. I WANT TO GIVE THEM MY POINT OR TELL THEM MY STORY .PHILIP IS A HANDSOME YOUNG MAN I WENT THOUGHT WHAT HE IS AT SCHOOL . BEKHA SHE IS SO BEAUTIFUL . I CRY AND EVERYTIME I SAW THAT SHE WAS GOING TO FALL I HELP TO TRY TO CATCH HER . NOWING THAT I CAN'T I CRY MORE . AMBER SHE IS ALLSO BEAUITFUL . SO I HAD TO SAY THIS .I FEEL A BIG CONNETING WITH THEM . I LOVE TO HEAR MORE ABOUT THEM .
Reply to this comment | Edit | Delete | Flag
#
Katherine
Katherine commented | 8 hours ago
Thank you for doing this show.
Reply to this comment | Edit | Delete | Flag
#
Ann
Ann commented | 8 hours ago
I have NF type one. THANK YOU So much MTV for doing this. http://www.youtube.com/watch?v=RvqGraYY11k
Reply to this comment | Edit | Delete | Flag
#
Tiffanie
Tiffanie commented | 9 hours ago
i missed it cause i was @ work when it came on, But watching now is inspiring in a way…
Reply to this comment | Edit | Delete | Flag
#
clarinetplayer87
clarinetplayer87 commented | 9 hours ago
I am 22 years, I have NF 1. It is not as bad I have a tumor on the bottom of my big left toe, I have had two surgery's, but the tumor is branching off in so many directions, they can't get all of it. Because of it that foot is smaller than the right so that does make it hard to buy shoes. It has been hard to walk sometimes, because the toe cramps and hurts sometimes to the point I can't walk. I have learned to over come it and not let it stop me from what I like to do.
Reply to this comment | Edit | Delete | Flag
#
Jocelyn
Jocelyn commented | 10 hours ago
im 20yrs old i got NF1 but its not as bad as this im thankful for that, i hate it :[ but my nf is only my baeuty marks the (brown spots) i did have tumors but i got them removed. i got spinal surgery n i came out fine, but seeing this episode made me much more stronger, and im the only one in my family, i dnt undertand why i got i but i had already accept it,,
April 15th, 2010 at 11:41 am
One of our own, from Texas, Amber was on the MTV. She is also a regular at the Texas NF Camp each year. Also, Monday, Pha from Califonia, also a camper alumni pass away.
April 15th, 2010 at 1:17 pm
I didn’t recognize Amanda but now that you say that, sure, I know her! Sorry to hear about Pha, not sure if I know her.
April 15th, 2010 at 2:12 pm
Pha, he came couple times, I know 2004 and another after that. He did not attend last year or 2008.
April 15th, 2010 at 2:23 pm
I stand corrected, Pha attended in 2003 and 2004. His photo is on his Facebook, and I posted his photo in a group photo from camp taken in 2004.
April 15th, 2010 at 5:09 pm
What’s his last name?
April 15th, 2010 at 5:12 pm
Never mind, found it…Pha Prum. He’s really young. What did he die of if I may be so bold? NF-related?
April 15th, 2010 at 6:12 pm
It could have been. It could have been some internal NF issues.
April 16th, 2010 at 12:31 am
How are you doing? Any luck with work? Or just living the life?