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Old 10-24-2010, 04:24 AM   #1
Join Date: Oct 2010
Location: Holland, Michigan
Posts: 69
Heaven4Love HB User
Unhappy Neurofibromatosis


Neurofibromatosis is a disease
I was born with as others have it as well, some are so lucky though that they really have no signs at all that shows they have this dosease then they have people like myself who are not so lucky- who has tumors all over their whole body as I do; I am always having surgery done on something and those surgeries are not ones that I ask for them to do either.

Living with this disease is something I wish
On nobody-I do wish though I did not have it so badly and having surgery done so many times a year. I am always down now about this anytime I end up with a tumor or something else that goes wrong about myself I cry... Just this past month I ended up with 2000 new tumors alone and that is not a lie. I also am always getting made fun of from everyone even people who are grandma's and great grandma's;l life is not easy living with Neurofibromatosis- I will tell you that. Would you be able to stand having 332 surgeires done out of your life? how about losing you leg and not even beening able to wear a fake one due to having to many hot spots?

I live my life in a wheelchair now- as I use to be
[LEFT]A dance, and a singer. I now no longer can do all of the things I use to love. It breaks my heart and it really gets me down. I also am not even able to live long enough to see my daughter; be able to drive her first new car, see her off to her JR and SR prom, nor would I even be able to see her marry her man of her dreams and hold her first born child. This disease is taking my life away from me due to this growth growing around my heart that they are un able to move; not only that this growth is one that has cancer in it at that. So when you see someone with tumors on their body or spots on them- leave them be because you never know Neurofibromatosis is something they may have and they may be also dying from it as well....

"Note= None of my kids were born with the disease either-
Sadly though my twin boys died the sameday they were born/
They were NF free as well..."

Thank you, for reading on
True Love is one of the rarest things to come by; once you do end up finding it treat is as if it was a treasure; because it is one of the most preious things to ever share with someone.

Last edited by Heaven4Love; 10-24-2010 at 04:43 AM. Reason: Thought it would let me fix where it was black at

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Old 11-02-2010, 02:51 PM   #2
Join Date: Nov 2010
Location: canada
Posts: 6
travelguy HB User
Re: Neurofibromatosis

I have type 1 and have been lucky not to have any tumors, i just have some lumps and bumbs that i get removed every 1-2 years. The only way NF1 has effected me is its given me a minor learning challenge that I easily over come, i have some neck and back pain, and my speech is a bit off but if i speak slowly that isn't a problem. I'd be happy to talk to anyone about my condition if anyone has any quesitons, i am very open and would love to talk to other young people who have NF1 or NF2.

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HannahJane (01-02-2011)
Old 11-04-2010, 11:44 AM   #3
Join Date: Nov 2010
Location: florida, usa
Posts: 3
catmom10 HB User
Re: Neurofibromatosis

well i have had it all my life though the first diagnosis was cp not nf cause they didtn know. then when i was 13 i had tumor removed and they said nf 1

i just want to talk to people with it and find out how it affects them. specifically ones that are only children or the only child in their family with it.

how does it affect day to day life? dou have any other disabilities. how does it affect your social life? what other things happened if any that make u seem freakish?
i am lookign for those who are having adjustment problems. to daily life, to working to getting along with people.

and anyone who can offer suggestions. looking for ages 40 and over specifically but younger are welcome to answer .

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HannahJane (01-02-2011)
Old 12-21-2010, 12:34 PM   #4
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Join Date: Dec 2010
Location: knoxville,TN. USA
Posts: 6
HollieBabie1 HB User
Re: Neurofibromatosis

I live with this also for the past 56 years. My daughter was lucky & does show any signs of it.Blessed a second time with the granddaugher all of 14yrs old now & seems to be doing Ok with just a few brithmarks. But not enough to say she has it!
I truely get where your coming from. Has of now I'm recouperating from yet again another surgery. This time 26 off my body & 5 off my only good foot. So I'm hobbling along on my artifical leg & trying not to damage the surgery on the so called good foot!
I've lost 3 siblings to this. An older brother he was an NF2 & a set of twins who barely got to breath life. I've 2 brothers who will not even deal with the fact they have it. Then theres me whos open minded & will talk to anyone who does & don't hide the fact I do have it!

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HannahJane (01-02-2011)
Old 01-01-2011, 10:47 PM   #5
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Join Date: Jan 2011
Location: UK
Posts: 12
HannahJane HB User
Re: Neurofibromatosis

Hi, I also Have NF Type 1.

I was diagnosed at 13 when a Tumour was pressing on a nerve in my leg.
I was given my diagnosis and not another word was spoken about it for ten years..

I had the "lumps and bumps" but thats as far as my condition went

In 2005 I was diagnosed with a Nuerofibromasarcoma, Grade 3. Also, in my leg.
I have 2 children with the condition, and My getting it was a "freak" occcurance.

I am the ONLY member of my family to have ever had NF, Bar my children who inherited it.

I do understand there can be a link from having an epileptic parent to having NF, but as people with NF will know, there is Not a great deal known about why NF even exists.

All we really know is that its a genetic mutation of a chromosone.

Happy to talk to other suffers

Regards xx

Old 01-02-2011, 08:39 AM   #6
HollieBabie1's Avatar
Join Date: Dec 2010
Location: knoxville,TN. USA
Posts: 6
HollieBabie1 HB User
Re: Neurofibromatosis


I gather from your screen name your a cat person?? Its cute.. We have a cat hes huge about 26 lbs worth.. Hes actually my granddaughters baby..Hes a sweet heart! I like cats but I'm a dog sortta person..
I've had NF1 from brith.. I've had so many surgeries I've lost count.. Over 14 to 16 by the time I was 13 yrs old..Many more since then.. Growning up was the hardest school & lack of good friends.. I always felt like the freak.. The braces & crutches made me a target for bullies.. The birth marks my short height,added to the bullies enjoyment..
Some how I managed to get though it all.. Getting out of school for surgeries gave me a much needed breather.. I'd often be out most the school year for surgeries or go back at mid term..I loved home teachering.. I even enjoyed doing home work.. Once I got back to school it sucked & I stayed to myself since talking to or with others seldom happened.. Thou I did make a few friends I was always on guard with them.. I've actually 2 people all these years later I can say are true friends from my school years!! Has an Adult its alot differant..When making new friends I'm careful.. It takes awhile for me to truely let some one in.. Once I do you get my heart along with it!! It's easyer for me has a adult to make friends.. I think most adults have had that chance to see life differantly & understand for the most part we're no differant than others,we just have extra baggage but want to be treated normal.. A true friend will see this & the rest is just there.. After all we all have some baggage that we have to deal with!! I'm sure its not all pretty!!
Thur out my adult years till now.. Life has been pretty good.. I've been married almost 38 years.. Hes always been there thur thick & thin & all the blasted surgeries..The highs the lows..Its not always been easy I'd be lying if I said it was.. We have a grown daughter & a 14 year old granddaughter.. Has of now one little 4 legged baby & the cat LOL!! Life is what you make it! Has an adult we can control more of it than has a child.. I also believe because we've dealt with things were more understanding,willing to listen & we just plan "Get It" when others are dealing with issues..

Old 02-27-2011, 06:56 AM   #7
Junior Member
Join Date: Dec 2010
Location: Boston
Posts: 32
Bermuda89 HB User
Re: Neurofibromatosis

I am 44years old, I have a mild case of NF1. I have some cafe spots on stomach, back and legs. Had a scoloiosis operation when I was younger. Had no other surguries due to nf. Decided not to have children did not want to pass this on.

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