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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fabulous 02/13/2009

I love you guys so please don't take it this blog personal. This is a new year and frankly Im tired of expensing soooo much engery with NF and the world is in economic crisis. I know this is hard to live with, I know we get depressed but really the more we stress over it, the worse its gonna be. There are people out there dying of cancer, aids, cant even get up out of bed and here we are bitching and moaning about NF. People gonna look and stare and so what. Let them look and stare. Most of you guys have husbands/wives and families that love you. Dont worry about what the other people are thinking. They have their own problems. Of course kids are gonna look. Thats what kids do. There are times I come on here feeling great, just reading blogs about accomplishments and then after reading some, I leave here sad and defeated. I have seen most of your pictures on here and let me tell you. And I say to myself are these people crazy or something. They look beautiful. So lets just stop beating up on ourself. Say Forget (I can curse so the word is Forget) those that dont like it and move on.

I love you guys

deleted_user 02/15/2009

Now you sound like my Mom who does not have NF and can't relate.
Sure, 'SOMEONE' else is always worse.
that is no consolation though.
Now would I rather be blind than have NF. NO, would I rather be deaf? No.
How about 1 leg? Probably yes.
NF sucks. that is the bottom line.
I often wonder what the suicide rate of for people like us or people with other types of medical problems vs those who are normal.

Marah 02/15/2009

I agree with Bumpy. The fact is it does factor in to most of our lives. I do have a husband and children that I do believe love me. But I also worry if he finds me attractive and if they are embarrassed to be seen with me. No, they don't tell me that, but they wouldn't because they love me. And with the economy the way it is, I can't get a job, and I wonder after being called about my resume and having a good phone interview, if the bumps ended my possiblilty of getting the job. And I worry if the new "health czar" will think removing tumors or treating my other potential NF related health problems will be cost effective. And I would also like to know about the suicide or at least depression rate of people like us. I don't want NF to control my life. But the fact is, it does effect how others see me. I can pretend it doesn't exist, but it does. I do try to stay positive. I run to raise money and awareness of NF. I am working on my third marathon in spite of having asthma and arthritis and NF. I am doing the best I can. But the fact is, people who don't have this condition don't understand. This is the one place I feel free to express these feelings.

Akie 02/16/2009

I agree with Bumpy and Marah, NF sucks and this is our place to sound off with others that understand our issues and feelings!

fabulous 02/18/2009

In no way am i trying to discount anybodys feelings. I have it too but Im so sick and tired of feeling sad and depressed. I believe stress brings it out more...and why stress over something that we cannot control. Trust and believe if we didnt have NF, we would find something else to complain about. I love you all and I wasnt trying to offend anybody or make anybody feel worse.

deleted_user 02/18/2009

Bumpy1 I know what you mean on the suicide topic... I have thought about it before,and have been backeracted for being a cutter,but Im slowly getting better,NF does suck... I hate spring and summer time when its swim suit weather and i try on a suit and see bumps staring at me... I think this summer Ill invest into a one piece, I complain alot about my NF I feel its taking over my life sometimes but I also am looking into ways to decrease tumours,bumps and what not.... and I wake up every day thankful my boyf doesnt let the NF bother him...

deleted_user 02/19/2009

Hello,

I dont have NF, but have a beautiful 7 month old daughter that does. Before her diagnosis, NF was not even in my thought process. She has several spots on her body and people always comment on them.. at first it would bug me, but I have come to terms with the idea of raising a child with NF. I have no idea what is in store for us .. but I have faith and now that I will raise my daughter to love herself.. spots and all.. I woulf really love to hear any experiences or advise from anyone currently living wiht NF. My daughter was diagnosed about 3 months ago so I am still learning about NF. I look foward to sharing my experiences with you and learning from yours....

fabulous 02/20/2009

I know how everybody feels. I feel the same way. I hate summer and spring. I lve in flordia so I have it bad. I had the suicide thoughts as well. You guys have husbands and boyfriends/ wives and girlfiends that love you. Dont second guess their love. They see something in you that shines. There will be a cure one day.

deleted_user 02/20/2009

Minascamilla writes:
"My daughter was diagnosed about 3 months ago so I am still learning about NF. I look foward to sharing my experiences with you and learning from yours.... "

You write a good message. You sound mature, educated and
calm. You kept mentioning " I" though, I hope your spouse or family will be there to support you through this.

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