Neurofibromatosis Support Group

Neurofibromatosis is usually noncancerous. There are three types of this condition. Type 1 usually appears in childhood, while Types 2 and 3 appear in early adulthood. Type 1 can cause bone deformities, learning disabilities, and high blood pressure. Type 2 can cause hearing loss, vision loss, and difficulty with balance. Type 3 can cause chronic pain throughout the body....

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Having children if you have NF. Why?

hamby03
hamby03
Im not asking this question to be rude, mean, or to persecute the people who have, Ive just always wondered why someone who knows they have NF would choose to have children.

Were all on this message board for one reason; because we, or someone we know has NF. We all know that although life can be great, NF can make life a living hell. NF causes things like tumors, bumps, disfigurement, malformations, pain, embarrassment and countless other issues. If you hate NF, and the way it has affected your body and your life, then why would you choose to subject another living creature to the same torture you endure every day of your life?

I realize that many people, for one reason or another, actually want to have children, but isnt it being selfish to put your want to have children ahead of the need that child has for a disease free, pain free, humiliation free life?

I also feel this dirties the gene pool and makes the problem worse. If hungry people breed, they just create more hungry people and make the problem worse. I know we cant get rid of NF completely, because sometimes its a case of gene mutation, but shouldnt we take measures to get rid of NF, but reducing the number of people who are born with NF?

As I stated in the beginning of my post, Im not trying to anger anyone, or be rude, Ive just been curious about this for a while. Ive seen other people make posts that hint at the fact that they dont think NF should be bread, so I figured I would start a discussion.
maggieww
maggieww
as one of the other posts said babies dont come with garantees geneticly perfect people can have geneticly imperfect children. also it must be remembered that nf can be a result of spontaneous genetic mutation.
deleted_user
deleted_user
Woofman said " If you know you or your spouse has NF, why would you take even the smallest chance of passing on the pain and sorrow you have already experienced to your children! How cruel and selfish is that! "

Holy Crap, I can't believe you said that. What if it was determined that your baby would be GAY.. Would you TERMINATE that
fetus too? After all, we all know the hell
Gays get in this world. You should know that
prejudice personally.
Hey, I have an idea, with the comming of Socialized Healthcare, Why dont we station a genetic government specialist at each hospital. If the baby is deemed 'not viable' meaning, it could have nf, become gay, a drunk, drug user, go blind, bad heart, etc. lets just save the world the expense and kill the baby...
I can't believe You of all people would make such a crappy statement as you did.
hamby03
hamby03
It probably doesn't help that I feel no one should breed. I had surgery when I was 29 to make sure that never happened and its the best thing I ever did. The world is already over populated and things are only going to get worse. No one seems to have a problem with fixing animal over population by putting animals to sleep, but when it comes to human over population, our answer is create more babies. Theres actually an organization that tries to promote that everyone should stop having babies and just let the current population enjoy life and let mankind diet off and give the earth back to nature. Im actually a strong believer in that. I dont believe in the whole be fruitful and multiply. We already cant feed all the people we have, so how are we going to support all the new people who will be born in the coming years. Its almost impossible to go anywhere in the world and have peace and quiet without insane congestion, and people are only making it worse.
deleted_user
deleted_user
Hamby03
Your trying to force your opinions on people. I am not going to have an abortion if my baby does have NF.
I don't believe in having abortions. Your outlook on having children is certaintly your own opinion but don't put down people that want to have children.
My NF is very mild.You would have know that I have it to even notice it for that matter.
My husband and I know that there is a 50/50 percent chance that the child that i am carrying right now will have NF. we are willing to take that risk and get the medical help that we need if necessary.
Taqueme
Taqueme
Rich, poor, black, white, asian,latino, whatever. I have NF my two girls have NF. Yes, I did it twice, call me a mavrick. I did not have a horrible life. I get some stares, so what. People stare at Brad Pitt, you don't see him complaining. You never have to worry about having an alibi, people will all remember you. Life is what you make of it. Even with my bumps, There are a lot of other people with whom I would never trade places. So much can go wrong in life. Life is for living. People are going to approve or disapprove of you and the things you do no matter what. Live your life to its fullest. Have children or don't but be sure it is your choice. The only difference between me having NF and my daughters will be,
they have me to look to as a role model. If you live your life in the shadows your kids will too. If you walk in the light your kids will follow.
deleted_user
deleted_user
I don't see what the big deal is on who should or shouldn't be able to have children.one shouldn't have to be perfectly flawless to have a child... it isn't possible :( I hate living in a world where if you have one disease you're considered flawed and should be condemned to Hell. All those celebrities we see on t.v. they too have problems they just decide to have a ton of plastic surgery to cover it... maybe celebrities shouldn't breed either since they too are messed up mentally??? I hate having NF as much as the rest of us but I will not let it stop me from living a life as normal as possible... besides flawless people and their opinions on t.v. don't matter to me... what they think is just an opinion... and like my mom told me people are going to stare and whisper... but they do the same thing as i do... eat,sleep,poop,pee,work,have sex,ect... we all do the same thing everyday and just because someone has a genetic disease or what not doesn't mean they shouldn't be able to have kids.Hell I can guarantee the people who look flawless on the outside are suffering with flaws on the inside.(mental issues,depression,drug abuse,alchoholism..) maybe they too shouldn't breed.I'd rather have a child with a physical flaw then be born with a case of mental issues or drug addiction... so therefore noone should really breed because noone is perfect...
deleted_user
deleted_user
IN the 1940's a german man had the same views as yourself..His name was hitler.Dirty the gene pool?....perhaps you should read up a bit more on genetics.There will never be a time when we can rid the human race of such abnormalites ..Because as 1 is eradicated a new 1 will be discovered
deleted_user
deleted_user
When my parents had me in 1979 they knew the chances were 50/50 that I would have it. It turns out that I have a very mild case of it,I only have a learning disability because of the NF.
I am now almost 10 weeks pregnant as of tomorrow.I am not going to worry about getting genetic testing before the baby is born to see whether he/she has NF. That is a chance that my husband and I are willing to take.
I don't let NF run my life. I am the maker of my own destiny and my destiny is to have children.
Hamboy03- You might have thought that this question was rude but it is. You shouldn't be telling us who should or shouldn't have children. Just because you and your wife decided not to have children. That is your choice but you shouldn't force it on someone else.
My husband and I are smart enough to get the information that we need if our child has NF.
deleted_user
deleted_user
Why dont you just end your life now if its that bad,

The way to end world hunger - not have children - I nearly fell off my chair laughing.

Did you re-read this question before you posted it, I think not.
deleted_user
deleted_user
I don't see why people have to jump all over our friend here just for saying what he believes. We're here to discuss how NF effects us. Just cause a guy doesn't want the chance of passing this wretched curse to his children he's taken to the gallows. He never told anyone to do anything he just asked why they would . He wasn't asking for a pitty party but what he's been through he doesn't ask it on anyone. Maybe if someone would have said something nice you could have changed his mind on having kids.
deleted_user
deleted_user
we are all entitled to have our opinions sugar coated or not.
the world is a pretty darn harsh place and the only thing I worry for my son is for people to be kind to him
he will have my fiance and my ex husband on his side though.
i pitty anyone who makes disparaging remarks about my son.. tsk tsk on anyone who really makes fun of anyone really
we all do it, but recently i have really looked at what people have become.
i wish it was easier for us all..
deleted_user
deleted_user
Some of us have told him the good things about having kids, even those that have NF. We know the possibility that our baby will get NF is high but we are willing to take that chance.
As someone had posted before. If our parents had aborted us after finding out that we had NF, none of us would be here.
I am grateful that my parents didn't decide to abort me. I am almost 30 years old and I am happy to be alive.
deleted_user
deleted_user
we choose to have children for the same reasons everyone else does....there is no greator love than that of a child... almost all kids are teased for one reason or another (they are short, tall, chunky, a nerd, wear glasses , the list can go on forever) kids without NF get teased too, it's part of life.... They pick on each other for anything and everything... and i would be willing to bet that you picked on a few kids in your youth as well... Im sure we all have in someway or another. As a kid i was teased more for wearing glasses and being blonde than for the very noticable effect NF has had on me... all disfiguring diseases could be eradicated, but that won't stop kids from teasing other kids....
deleted_user
deleted_user
He didn't just say what he believes in. He was asking for a debate because he couldn't understand why on earth people with NF would have children. That has an underlying negative tone of judgement. Plus, have you been reading his responses and posts?

I personally am sick of this superiority complex some people with NF seems to have because they made the 'better decision' of not choosing to have a child.

Personally, I am not choosing to have biological children, but don't think my own personal decision is better than anyone elses.

No one is trying to change his decision, but he did ask for reasons, and we gave him them.

I highly doubt anyone here wants to change his choice.
deleted_user
deleted_user
I agree Mafrank... everyone teases someone over something or another. Making fun of people for what they cannot control is lame. I can see where hamby is comin from but also it is just a opinion and all he did was ask why... I say those who want children have them and those who do not want them then don't.We shldnt debate this topic anymore. But it is amusing how so many people think we shld exterminate people who are sick,poor, and physically flawed LOL. I wld love to see one person who isn't flawed mentally and physically... point blank everyone is flawed.. every one is free to make choices in his or her life... and tht is life.