From: tumorfarmer <tumorfarmer@...>
Subject: [Neurofibromatosis] Re: hello
To: neurofibromatosis2@yahoogroups.com
Date: Wednesday, July 15, 2009, 3:34 PM

 

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 do see where people are unsure of some of the details of NF1 or NF2 in order to help them understand this disease a bit better. I have discovered it is absolutely essential to know as much as possible about NF1 & NF2 if you have it, because most doctors have very little knowledge about it and as a result, they often treat it like cancer, using chemotherapy and radiation which most often turn these benign tumors malignant.

Despite what some doctors erroneously believe, it is VERY easy for someone to have both NF1 & NF2! All it takes is to inherit type 1 from one parent, and type 2 from the other parent! Since that can happen in ANY generation, for any medical professional to even consider, let alone say that such a case is impossible, is to expose a hole in their education and/or their scientific methodology and training. Once one generation has both types, they can pass down one or both, or even none of these diseases to their children and future generations. I have both NF1 & NF2, it appears my Mom's Mom passed down the NF1, and we suspect that my Dad has the NF2.

My parents have never had health insurance until they recently qualified for Medicare, so of course they didn't know anything about NF! My Mom and her Mom both have some of the bumps & neurofibromas on their faces and scattered here and there. Grandma had the severe problems of NF1, but doctors did not know what NF was at that time. I have had the bumps on my face since I was a child, and been teased about them and the "wart" on my lip my whole life.

Nora, when I read your note, I literally thought for a minute I was reading one of my postings about me, because I also had the hearing loss on the left side and multiple spinal tumors! Your doctor, like many others in the medical profession, needs educated about the real facts of life regarding genetics and NF1&2! Yes, anyone can "mutate" at conception and have these diseases despite no one in their family having it. However, because our understanding of genetics and these diseases has only blossomed in the last 19 or 20 years, many people who had these diseases were dismissed by their doctors as hypochondriacs with "phantom pain" and symptoms. It is only the advent of MRIs that has been able to give doctors the knowledge that we DO have tumors they can't see from the outside! CAT scans only show tumors that are "huge" (according to the doctor who first diagnosed me with NF2).

There is another book about a young girl who had NF2 really bad, she actually passed away at the age of 22 if I remember correctly. It is called "Karen's Test". I will have to look up her last name sometime and post the information so people can find it to read if they want. She lived in Utah, and I think that is where the publisher was too. That is the only book I have found about someone with NF, so I am interested in finding this other book you have mentioned too!

I have to take my dog outside, and my hubby will probably use the computer to play World of Warcraft, so I guess it is Goodbye for now! LOL!
Becky in NC "tumorfarmer"

--- In neurofibromatosis2@ yahoogroups. com, Kristy Wilday <flowerlilliesofthe garden@.. .> wrote:
>
> 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
> Richard Severo. Have not gotten very far, but it's sad from the very
> beginning.
>
> I would like to meet the author of this story.
>
> ~Kristy~
>
> On Mon, Jul 13, 2009 at 1:44 PM, Tessy Merino <laredogirl_ 20006@.... >wrote:
>
> >
> >
> > 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 bums all over my face and i dont feel prety anyway not all
> > the time but may be 2 to4 times we go to the mall to the play area kids and
> > my girls want to make friends and they see im their mom they go talk
> > to their mom and thier parents tell the kids no to play iwth my girls becaue
> > what ever i have is contagious and im a monster sometimes my older daughter
> > shes 7 she will cry and said to the kdis mom my mom is not a munster shes
> > pretty and i lvoe her dont call her names and it was an incident that the
> > mom grab my daughter and said yes she is a monster i got up and push the
> > lady and told her to never ever touch my daughter the police came and well
> > is a long story and tahts waht makes me so upset to see kdis been mean and
> > teaching their kids to be rude and disrespectful to others jsut becasue they
> > look different can u give me the name of u book i would like to read it. my
> > name is tessy.
> >
> > TESSY, DESTINY, ANDREA MERINO
> > *-------Mensaje original---- ---*
> >
> > *De:* Kristy Wilday <flowerlilliesofthe garden@.. .>
> > *Fecha:* 12/07/2009 11:42:46 a.m.
> > *Para:* neurofibromatosis2@ yahoogroups. com<neurofibromatosis2@ yahoogroups. com>
> > *Asunto:* Re: [Neurofibromatosis] Re: hello
> >
> > 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 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@ yahoo.com>* wrote:
> >
> > From: Nora Fletcher <littlenloud78@ yahoo.com>
> > 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
> >
> > [image: Lilypie 4th Birthday Ticker] <http://lilypie. com>
> >
> >
> > [image: Lilypie 1st Birthday Ticker] <http://lilypie. com>
> >
> > --- On *Sat, 7/11/09, Kristy Wilday <flowerlilliesofthe g arden@yahoo. com>
> > * wrote:
> >
> > From: Kristy Wilday <flowerlilliesofthe g arden@yahoo. com>
> > 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@ yahoo.com>* wrote:
> >
> > From: Tessy Merino <laredogirl_ 20006@ yahoo.com>
> > 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.
> >
> > TESSY, DESTINY, ANDREA MERINO
> > *-------Mensaje original---- ---*
> >
> > *De:* littlenloud78
> > *Fecha:* 08/07/2009 08:30:41 p.m.
> > *Para:* neurofibromatosis2@ yahoogroups. com
> > *Asunto:* [Neurofibromatosis] Re: hello
> >
> >
> > 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
> > 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.
> >
> > Nora
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
>