I think we are always going to run into some people that are really rude, but not everyone is like that. Some people I have found are just curious. I don't have it as bad as my mom and I disagree that a person can't have NF2 just because their parent has it because my mom has NF but no one in her family has it, so I think it's extremely possible to have either one even if the parent has one but not the other.
Also my mom has had problems with people being rude; this guy who I think is homeless told my mom she had leprosy and insisted that is what it was and told her to drink wine and stuff. People can be mean. We know it's not leprosy but ignorant people don't care. This man was ignorant and I was not there to do anything about it, but a friend was with her and she got so mad at the person and started
yelling at him. So people can definitely be rude.
Young children who ask their parents I think are just curious and if they are 5 or under; I don't think they really mean any harm and that is when it depends on the parent to teach them how to behave because if they tell the child not to stare, I have the guts to explain, but if the child is rude and says nasty things, then I don't want to explain to them because of their negative reaction or the parents negative reaction. I have explained to adults and their child about the NF. Some of them are just curious and are afraid to ask because we would be offended. I've even met people who may have had a relative with the same disorder, but they had no idea what it was. I also met this father whose child had it, and no one in their family had it. I've met others who have it in their family that was passed down but skipped a generation.
There were two
times when I thought a child was cute in how they asked. One kid was autistic and he was so fascinated with my mom's bumps that he wanted to feel them. He thought it was cool. lol. My mom let him.
Another time when my mom and I went out to lunch, this little girl came up to my mom and asked her what happen. My mom didn't say anything, so I explained the best I could, and her response was to rub my mom's arm and said, "Oh, I'm sorry" and she felt bad for my mom and I think she was about 4. I thought it was so sweet. My niece thinks her grammas bumps are cool! lol.
We will run into conceited people who are outright rude and nasty, but occasionally we will meet people who are just curious. It stinks though how people can be so mean and hateful, as if we have aids and they are afraid of catching it. That's what kids told me my mom had when I was little and they didn't even know
that I had NF also. I knew it was not aids because they taught us you cannot see aids. You cannot tell if a person has aids. They were just mean.
I am reading a book about a girl who had NF and was the only one in her family that had it. The tumors covered her face and she had had many surgeries to fix her face and just kept having them. I am not finished with the book and it's pretty sad, but I will find the library book and send you the title and author of the book. It makes me cry.
~Kristy~
--- On Sun, 7/12/09, Nora Fletcher <littlenloud78@...> wrote:
From: Nora Fletcher
<littlenloud78@...> Subject: Re: [Neurofibromatosis] Re: hello To: neurofibromatosis2@yahoogroups.com Date: Sunday, July 12, 2009, 7:30 AM
Nice to meet you, Kristy and Tess --
I'm also not sure if i have NF1 or NF2; it seems that I have more symptoms related to NF2, but my Dad had NF1. The doctors have told me that for me to have NF2 while my dad has NF1 would be almost impossible as only the same gene strain is passed.
Anyway, I have the hearing loss in my left ear and many, many tumors on the spine, etc., classic signs of NF2. But I also have the external tumors, which have gotten worse since I've had
kids. This makes sense though, as NF usually gets worse with the onset of hormones, obviously pregnancy brings on the hormones full force! But most of the external tumors are on my torso, and some mild ones on my arms and face. I have people ask about them; many people think the bumps are a rash. I find that people's curiosity is
sometimes rude. How do other people feel about it -- I mean when ppl ask if you have a rash, or hives or what happened? Does anyone have a good way of answering these kinds of questions?
I'm relocating to the Canton, OH area soon; does anyone else live here? Would be nice to meet some people -- maybe start a support group locally! :)
Talk to you later,
Nora
--- On Sat, 7/11/09, Kristy Wilday <flowerlilliesofthegarden@...> wrote:
From: Kristy
Wilday <flowerlilliesofthegarden@...> Subject: Re: [Neurofibromatosis] Re: hello To: neurofibromatosis2@yahoogroups.com Date: Saturday, July 11, 2009, 9:37 PM
Tess, welcome to the group. I am not certain which one I have or if I have both. I think it's NF1. One of them effects sight and hearing and that's not the problem with my case. My is very mild and most people do not know I have it, unless I tell them. My mom has it and my sister has it, but no one in my mom's family had it. My older brother does not have it.
That is a praise that your younger daughter does not have
it. My brother's kids don't have it; Thank God! We had always thought my brother had the gene and could pass it on to his children, but he doesn't even have the gene, so that is good. Find out if your younger daughter has a gene that can be passed to her kids. I know it's a long time before you have to worry about that, but maybe it would be good to
know?
Kristy
~Kristy~
--- On Wed, 7/8/09, Tessy Merino <laredogirl_20006@...> wrote:
From: Tessy Merino <laredogirl_20006@...> Subject: Re: [Neurofibromatosis] Re: hello To: neurofibromatosis2@yahoogroups.com Date: Wednesday, July 8, 2009, 6:44 PM
hello everyone im tessy i have nf but not sure if is 1 or 2 anyway nobody in my family has it im the only one and when i got pregnat my first daughetr shes 7 right now she has the same nf but im to ignorant not sure if is 1 or 2 im not sure what is the different nice to meet u terry and everyone else here im from well origianl from mexico but i been here in the states for 22 years and yes i am very legal here is nice to meet other people that has the same thing as i do becasue is hard for me to have friends for the same reasopn im very shy and have 2 friends and thats it usually people dont want to get close they say is contagous yes i know is ingorance but all that hurts me because it hurst my daughter by the way i have my second daughter and she dosent have it thank god im divorce and been for 5 years from day one after i was about 3 months pregantyt from my second daughter he left and he sign his rigths from his duaghters he said he was not
ready to be a father and he want it out. so i been on my own form that point on well hope i get to kow u all soon sincerely tessy sorry for my terrible spelling.
Nice to meet you. That's good that your granddaughter doesn't have NF. :) Have you had any problems with tumors in the intestine since you had that area removed? I'll be glad when they can find a cure/way to stop the tumors from growing back! Well, thanks for replying. I look forward to getting to know everyone better.
Hi, new member here. I'm a 30 y/o with NF. My dad has NF as well. Most of my tumors are on my spine, although I do have external ones as well. I live in an...
Hi Nora  My father had NF, I have NF, my son "Paul 30 years old" has NF. Thank God my new granddaughter does not NF. I had a groth on my small intestine,...
Hi Terry, Nice to meet you. That's good that your granddaughter doesn't have NF. :) Have you had any problems with tumors in the intestine since you had that...
hello everyone im tessy i have nf but not sure if is 1 or 2 anyway nobody in
my family has it im the only one and when i got pregnat my first daughetr
shes 7...
Tess, welcome to the group. I am not certain which one I have or if I have both. I think it's NF1. One of them effects sight and hearing and that's not...
So far I haven't. I beleve that whatever comes my way, God will get me through it. So I don't worry about what might happen. Terry ... From: littlenloud78...
Nice to meet you, Kristy and Tess -- I'm also not sure if i have NF1 or NF2; it seems that I have more symptoms related to NF2, but my Dad had NF1. The...
Hi Nora and all, I think we are always going to run into some people that are really rude, but not everyone is like that. Some people I have found are just...
hello everyone, I get most of looks from small children because of my right eye being close more because I am miss the bone behind it, once in a while I get a...
thought id say hi everyone. i havent had much luck in the past with online chats etc. re: nf. even tried starting a my space "community" to see if id find...
Hi John, How does the Gabapentin work for you? I don't have insurance, so don't take anything stronger than Ibuprofin, which you know... takes the edge off,...
Hi Nora, Gabapentin is not cheap a 800 mg is about $3.80 each, it is not like ibuprofin you don't just take it when needed have to take it 3x per day at the...
hi john, thanks. i'm familiar with what Gabapentin does, since I'm a nurse, but just wondered, since it is so expensive, if you liked how it worked for you. I...
hi crysti i agree with u i hate when people are rude to me they wotn even
let their kids play with my kdis i have NF1 is not to sever but i had some
of the...
mean parents...mean kids...i do not mean or wish that but any one can have a scars/bumps on face...by birth or by accident so if GOD forbidden some thing...
Hi Tessy, Yeah, I can give you the name of the book. I have to go find it. It's called "Lisa H" The True story of an extraordinary and Courageous Woman, by ...
Hello Everyone! I'm Becky (Rebecca)from North Carolina, I don't always get a chance to read all of the postings for our group, but I try to reply to any that I...
hi Becky, It has definitely been frustrating trying to get treatment. While my neurologists are knowledgeable enough about the condition to realize that...
some one told me Acupuncutre (a chinese way of treating people) is good...i am not aware as how much authentic it is but net can be searched for this...
Hi Nora & Everyone! Yes, getting pain management is difficult because so many people are scamming doctors trying to get pain killers or any other prescription...
thanks, I'd like to try that sometime -- however, just a word of caution, make sure the place you do it uses sterile technique with the accupuncture...
well it was gathering some where and some one told me (i don't exactly remember who he was) that his wife had used this during their baby's birth for pain...
hi nora ty for reply is very sad the way people is so sad, im sorry i did
not reply before my internet was down, i have a question do u know any dr
that does...
Tessy, Hi just wanted to let you know that there is a research clinic at Children's Medical Center In Dallas. Cooks in FW does as well but they do not follow...
HI IM sorry i havent respond before my interent went down anyway yes i know
\ people can be so mena and the kids even worst but the thing make me \ more up set...
hi tessy, I don't know of any doctors in texas, but if i hear anything, i'll let you know. :) good luck! sorry for the late reply, we're in the process...
OH DONT WORRY MY INTERENET WENT DOWN LAST NIGHT AND THANKS FOR TAKING U TIME
FOR REPLY GOOD LUCK IN U MOVE. WHAT IM GOING TO DO IS CHANGE DOCTORS AND SEE WHAT...
Hello, even if your doctor doesn't know much about NF, a good one will refer you to a neurologist or a specialist. Good luck. ... From: tessy merino...
... De: tessy merino Fecha: 7/28/2009 10:00:29 PM Para: neurofibromatosis2@yahoogroups.com Asunto: Re: [Neurofibromatosis] Re: hello YES i know what u mean but...
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