Join now

Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

corner corner corner

MTV Casting Call. True Life: I Have Neurofibromatosis

LumpsandBumps
  • By LumpsandBumps
  • Posted June 18, 2009 at 1:40 am · 82 replies
  • Shared with the public
8 Recommendations

True Life: I Have Neurofibromatosis
Are you living with Neurofibromatosis? Do you have visible tumors or spots on your skin that you wish you could get rid of for good? Were you recently diagnosed with NF, or have you had it as long as you can remember? Is NF causing problems for you at school, at work, or in social situations? If so, MTV wants to hear your story. If you appear to be between the ages of 16 and 25, please email Casting@gigantic.tv
with the details. Please include your name, location, phone number and photograph if possible.

Explore topics in this journal entry and replies:

Cancer Proteus syndrome Surgery Tourette syndrome Breast cancer Neurofibromatosis Pain Casting

82 replies

DJ1tx

I would love to be a part of this opportunity!

LumpsandBumps

Send Your story in. They will be able to see NF can varie form One person to the Next. NF varies from person to person. Every person with NF has their
own story. We all share alot with NF but none of are the same.
They need to know that there is more than just physical pain.
I Hope MTV recieves a lot of responses.

CindyLouWho

Good lord, MTV isn't exactly known as quality programming, is it? Sensationalism and education are not the same thing.

Shauna4222

I think any way to bring more attention to NF is great.

CindyLouWho

Really? Well I don't think any attention is necessarily good attention. I hardly think that the people who bring us programming the likes of Paris Hilton's BFF, are too interested in portraying a balanced picture of NF. Most of the time, actually ALL of the time, this type of programming portrays the worst case scenarios because that's what attracts viewers and its not a very sophisticated audience to begin with. A few of the episodes in this series are not bad but many are, in my opinion. In this case, the target audience is unlikely to be in a position or of a mind set to be donating to NF. So if it isn't all that educational and it doesn't have a fundraising purpose, that pretty much leaves no benefit other than entertainment. Call me crazy, but I don't actually want my daughter's disorder to be used as entertainment! They are unlikely to portray the average teenage NFer who has CALS and freckling and a couple of bumps. Clearly, the shear purpose of this is sensationalism which will be played out in countless reruns. As a parent of a preteen child who is quite vocal about explaining NF to her friends, I really do not need her to be viewing something that is totally skewed and under researched. Parents and families of newly diagnosed children don't need this type of programming either.

Surely, we can aim a little higher?!

guilty_spork

Sensationalism or not, if one person sees it and gains some flicker of understanding or compassion then its a good thing. Pink ribbons are sensationalism in advertising and retail. Do you think that the CEO of Energizer batteries give half a shit about breast cancer? No, but he like all the other pink ribbon pushing corperate scum bags like the attention that the pink ribbon gives thier product. Its the worst kind of people that put a pink ribbon on thier product to make a sale. How much of that money actually goes to research? The real positive is that it raises AWARENESS wich gets people thinking and acting... if nothing else understanding a little better. So is it sensationalising somthin that is horrible to those of us going through it? Yes. But if the money grubbing TV execs can get thier ratings and just a few people get a better understanding of this disease I say good. Also, the douch-bag college demograpic that is the target audience of MTV will grow up some day and graduate from med school and maybe one of them will be the doctor who worrks really hard to find a treatment or gene therapy for genetic disorders because of this show. Dont be too quick to write off the youth of today. Thet are the Neurologists of tomorrow.

trocks72

i do not think mtv, shoul even be on the air, everything about the show is wrong, for young people, preteens with nf or without. do we really want our daughters thinking and acting like they do on mtv? I dont even let my childern ages 9, and 16 watch that show.. Iam kinda upset they would even to a show on nf. Iamsure its not to ben fit anyone with nf. sorry to sound so harsh but I hate that show..

CindyLouWho

Spork, Sorry, I don't agree with your arguement. And as far as breast cancer goes... saying that awareness makes the rip off totally worth it makes zero sense. What good is awareness if it doesn't translate into something tangible. Some companies selling products don't stipulate how much will be donated to the cause and some only give a particularly tiny amount of the proceeds of the product. Sadly, in a few cases this lions share is going to support the manufacturing of products which may actually be implicated in causing or contributing to breast cancer in the first place! Direct donations are often better. You basically just proved my point that some catalysts for awareness can be counter productive.

As a parent of three children in the preteen and teen years, I am not discounting youth but as far as MTV inspiring the future neurologists of tomorrow....wow not only is that a scary thought, I would think the probability of that would be pretty low...I have yet to hear any of the great scientific minds of today, or any doctor at all for that matter, attribute St. Elsewhere or ER with being what launched their career.

I am not interested in repeating the freak show debate that raged for months on the other BB which is where I fear this is heading. I've stated my opinion which I know comes as no surprise whatsoever to Jerry, the original poster. I really only posted on this thread to try to give another perspective that people might consider. I guess we have agreed to disagree as Jerry by now knows there is no power on this planet that will change my thinking on this subject.

Cindy

MJF

I think perhaps some of you need to actually watch MTV or simply look at their programming schedule, then perhaps re evaluate their respective opinions. True MTV is the network that brought us "JackAss" but they also do lots of very good reality programming dealing with young people.

CindyLouWho

MJF, I have looked at their programming...even seen a few episodes of True Life. I still don't think they are going to be interested in a mildly affected NFer or that this is a good vehicle for awareness.

dragonfly1980

Why does everyone think that just because people that watch MTV they are not going to amount to anything. There is a world wide Doctor that did not always have the great life he wasnt always the good kid. He was raised in the so called "HOOD" . He did drugs and was in all kinds of trouble as a child. He grew up and became a world famous brain surgeny. He offers his time to 3rd world countries sometimes to seaver cases that can not afford to get medical treatment. He gives up his time to take care of his patinets. He left his family vaction one time to perform a emergency brain surgery. Hehad attempted to stab a boy he was fighting with when he was younger. I know this man personal. He is my son's brain surgen. I wouldnt let anyone els touch him. I dont look at his past life for who he is now. People can grown up and change. ........ As far as MTV makeing us out to be freaks it is possiable. But everyone has a oppion. If they want to do that then they are just making a fool of them selves. I will check out the show, personaly. I want to see what they have to say. I just dont think it is right for people to say just because people watch MTV that they are not the people we want to make awear. That is not always true. My tween watches all kinds of programs , (nothing to adult to corse), but she is a honor student , very bright, talented. She has won several contests for her art work. She is in a club at school that helps raise awearness for diffrent organaztions. And suppots all kinds of stuff. She on her own wrote a report about NF. which she does not have her self, and summited it to the club. She want to bring awearness about NF. So if she watches stupid shows on t.v live True life of anything. Are you saying that she will not amount to anything.Because of what she watches. I know first hand you are not what you are because of what you watch. You are who you are because of how you are rasied. If that makes any sence at all. I dont mean to offend anyone .

CindyLouWho

Uhhhh...yha, who said people who watch MTV won't amount to anything? I didn't say that. What I did say is that demographic is unlikely be one that is going to see the program and donate to the cause.That I didn't think these types of shows would inspire someone to pursue a career in medicine. And that I don't think their focus is educational or that it is sophisticated, informative television. My oldest does watch some MTV and I can assure you she WILL amount to something someday, she may even end up being a Doctor....but whatever she does, it won't be because of MTV.

You're right, people are free to do what they want. People who are considering this....Don't take my word for the fact that there have been issues with this show. People should do their own research. There are many stories of people who agreed to be on the show and then were surprised when the show changed the agenda, or the title, or some other aspect contrary to the original agreement, apparently to make the show more sensational. There are people who agreed to do the program in good faith and then felt that they were let down or exploited in some way. Some groups were very disappointed in how they were portrayed. If you think its worth the risk, then go for it.

green_mnm

I used to work for a production company and half the work I did there was for a program on a health-focused 'learning' channel (not TLC).

Medical accuracy? Portraying unbiased truth? That... wasn't done all that well. I left the company as soon as I could and may others have after me. It was all about sensationalism and puffing the ego of the CEO of the company.

I can almost bet that they won't even consider you unless you are affected visually and your story, even if you think you are telling it all and trying to really get it out there, will be edited to convey whatever they want.

Be aware of all that if you thinking of contacting them.

Also, what Cindy is saying I think is because of the overall demographics of MTV viewers, NOT someone you know, NOT you but the group as a whole, doesn't care about accuracy, aren't likely to point it out, ect.

It's like watching a medical program for doctors getting CME vs. a staged-reality 'medical program'. One will be more accurate obviously, and the other can be highly-biased and untrutful.

guilty_spork

This is turning into a debate over pop culture. My only point was that after being ignored by the so called "professionals" for so long, the idea of anyone bringing attention to others about what we go through is promising. I dont think that MTV is cool or good in any way. They cater to the lowest common denominator in our society. But awareness at least puts the knowledge out there. Knowledge, regardless of how its portrayed is neutral. Somone smart and caring enough will gain somthing from it, even if the show is a freak show for ignorant people. You wouldnt ban the special olympics because there are people who watch it to laugh at the participants? Sick people will be insensitive and cruel to others regardless. Having a documentary isnt a magic wand. It is what it is. An interprative portrayal of somone else's reality. Good and bad can come from anything. But doing nothing can only end badly. If you are worried about people seeing you or your loved ones as "freaks" maybe you are projecting your own insecurities onto others. A preemptive dismissal of them grounded in your own feelings about NF. Just because you cant accept it, dont assume others feel the same way. Be glad for the documentary, not in spite of the audience but BECAUSE of the audience. Kids with heads full of jackass and whatever NEED too see other people like them with NF. See thier faces. Hear thier names. It exposes them to real humanity when they are used to guys pooping in tubas. Not everyone who sees it will jump right up and say "I'm gonna cure NF!!" but if one person sees it and learns the story behind it and refrains from making fun of you or your child, then isnt it worth somthing? You dont know how one little idea can change a person and what that person will do with thier life. Im not defending MTV or todays kids, by any means. But untill Discovery or A&E do a doc on NF we are gonna hafta settle for MTV. Awareness is not a dirrect remedy to this just like pink everything isnt a remedy for breast cancer. Involvement is. But you cant get people involved in a cause they never heard of.

Irishlady79

I would LOVE to be on a panel to talk about living with NF, it would do the a world of good, We need to get the word out . But I'm the first generation of MYV and remeber when it ONLY showed musical video. Which makes be 24 year too old for the cut off, (boy that hurt)
We are not FREAKS I cann't stand that term. Many of us have written other show, They seem to have blown our story off
Start with MTV and work our story to better programs.
Any one but Jerry , I wouldn't any one to be laugh at

CindyLouWho

No this isn't a debate about pop culture or about youth for that matter and I'm not sure why we keep coming back to that. My opinions on this are not MTV specific. And no "knowledge regardless of how it is portrayed" is not neutral when the portrayal has been skewed and manipulated to represent an EXTREME situation that is not reflective of the larger reality.

Your comments about my "own insecurities" are totally below the belt. You don't know the first thing about me or what my involvement is in the NF community but I can tell you for free that I have NEVER shied away from the harsh realities of NF even when I quite easily could have because my child is not seriously affected. Yes, I am concerned for some of the families of children who do have facial differences or are more extremely affected by NF, particularly the new to NF families who are still in the grieving stages. I am concerned that everybody comes here to bitch when they hear of NF being billed as the Elephant Man's Disease but yet people like yourself support the programs that continue to portray exactly that. Tell you what though, lets do a show on the suffering of the several children I know of who have died with NF related cancer, or the 1 in 5 kids who have brain tumors....at least those extremes would be based on something other than appearances. Of course, those things don't have the same superficial shock value that producers of this type of programming aim for. That said, I do not personally happen to believe that anyone should be participating in a Freak Show on the basis of their NF, which BTW the original poster actually does.

No we absolutely don't actually have to settle for this type of programming. There are many things that we can do for the cause, many other types of shows that we can be on to get the word out without resorting to this

hopeful0712

How could we get a network like PBS, or Discovery Health interested in airing a show to raise awareness on NF?
How can we get the word out?
Any ideas?
We don't even know yet how MTV will portray the disease, I have my reservations, but one thing I do agree with, I don't want them to make us to feel as freaks.

guilty_spork

I lost most of my biological family to NF related cancer. So I know grief. I have grown up believing I have a ticking time bomb inside of me. Most of my life I was fortunate to get by with a few tumors and some spots. Now I'm falling apart and suffering constantly because of this disease. I dont care about any of that. What bothers me is that even doctors dont know enough to help us. It has to start somewhere. Anything and everything is proffitable to somone and the people who make money off sensationalism will always find somthing or somone to exploit. You can't be soo picky about the kind of attention NF gets at this point. Untill our disease becomes more "popular" research dollars and public awareness are valuable, no matter how we get them. I for one would like to be able to explain to stupid people what is wrong with me and why its hard to function normally. If somone has to make a dumbed-down, sensationalized documentary to inform these idiots in a way they can understand, then good. Ignorant people need to be talked to in a manner they can understand. As I said, It would be nice to have Oprah or the Discovery channel in our corner but we dont. Deal with it. Right now VERY FEW people care about you, me or our children because NF isnt a marketable cause. MTV sux. We all agree. What makes you think that Oprah is any different? She could care less if we live or die. her entire carreer is built on sensationalism mixed with a smarmy smile and false caring. Its all about ratings. If the MTV show does good, other networks will wanna cash in on NF stories. I will gladly be part of a freak show if it gets enough attention to get others to take a serious look at NF. This isnt about you or me or our personal feelings. If we want people to understand and support NF causes, they hafta know about it first. Its always hard being the first to speak up or let yourself be a spectacle. If you dont want to, thats fine. But at least recognize that somone has to do it. You cant win without risk. Everyone here understands the feeling of being treated like a freak but that will happen with or without a show about NF on a crappy TV network. Cant we at least try to gain somthing out of it. I'm a very negative person and I dont "look on the sunny side" but even I can see the positive in such an exploitive pice of garbage that I'm sure the show will be. You gotta take what you can get sometimes. And a slimy hand up is better than all the kind people in the world silently watching us drown.

Irishlady79

Hmmmm I'm going to word this the best I can , sorry if I step on any toes a head of time

Yes, yes we need to get the word out. But When ever I see any thing on the news or talk show or any medical shows like House or ER , They seem to show NF at it's worse like it's almost better to be dead, or what a "freak"
We need to show the public that we can NF without knowing it for years. I do have health problems with nf but if you saw me walking down the street you never know Yes it feels like a ticking time bomb , yes it's a part of me but I'm not going let it ge the better part of ME and who I AM
As I stated before to get on a panel, To get on a show like "I got a secret guess what it is"

LumpsandBumps

I didn't think that posting the MTV "True Life" would have this type of response.
I made no mention of "FREAKS".
If MTV does this right it could carry over to channels ike Noggin' and other channels aimed at the tween to college age demograh\phics.

If anybody has questions about the Freakshow ,Freaks incindent. Just ask.

Add to the discussion

Don't have an Inspire account? Join now!

Forgot password?

You