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....
I've seen a few posting about similar topics and I figured I would start a posting about how NF affects the lives of those who have NF and the ones around them.
One of the reasons I ask this question is because in my 34+ years of life, I think I may have seen a total of 4 people in person that I could tell they definitely have NF, and two of those people are myself and my sister. The last statistic I read said something like 100,000 Americans have NF, but why is it that we don't usually see them.
When I go to the store, night clubs, office buildings, or any other place of business, I keep wondering where they are. I'm wondering if most people with NF, or at least those with severe NF avoid going out in public any more than they have to.
My NF started getting a little worse about a year ago, and I'm very lucky that I work from home, so I don't have to leave the house to earn a living and I only leave the house to go shopping with my wife or to the flying field. I'm wondering if I'll become even more of a homebody if my NF gets worse and the plastic surgeon isn't able to fix it.
One time I was at a restaurant and saw a guy that looked like he was covered in NF bumps, and I wanted to talk to him, but didn't want to disturb him since he was eating.
It makes me a little sad to think that some people with NF may not be able to enjoy all the things I take for granted as a person with a relatively mild case of NF. Something as simple as going to a restaurant with my wife for lunch for example. There may be people who aren't able to just go to a restaurant, because they're self conscious about how they look.
Thanks,
James
One of the reasons I ask this question is because in my 34+ years of life, I think I may have seen a total of 4 people in person that I could tell they definitely have NF, and two of those people are myself and my sister. The last statistic I read said something like 100,000 Americans have NF, but why is it that we don't usually see them.
When I go to the store, night clubs, office buildings, or any other place of business, I keep wondering where they are. I'm wondering if most people with NF, or at least those with severe NF avoid going out in public any more than they have to.
My NF started getting a little worse about a year ago, and I'm very lucky that I work from home, so I don't have to leave the house to earn a living and I only leave the house to go shopping with my wife or to the flying field. I'm wondering if I'll become even more of a homebody if my NF gets worse and the plastic surgeon isn't able to fix it.
One time I was at a restaurant and saw a guy that looked like he was covered in NF bumps, and I wanted to talk to him, but didn't want to disturb him since he was eating.
It makes me a little sad to think that some people with NF may not be able to enjoy all the things I take for granted as a person with a relatively mild case of NF. Something as simple as going to a restaurant with my wife for lunch for example. There may be people who aren't able to just go to a restaurant, because they're self conscious about how they look.
Thanks,
James
I do have people stare at me in public and children will ask me what is wrong with my face. It gets old.
and I have only seen one person with NF that actually told me openy after seeing some on my arms. she was at work, I work with her.
more people ask about my tattoos than my nf
so far its mild like acne and if i dont mention it no one else seems to
if they want to judge, well it just is then because i am not going to take an effort into anyone tht is so superficial
my fiance accepts me and the nf and my son with nf so life is pretty grand.
i worry often, but it just gets in the way of being hapy so i try not to
Depending on my mood, I might just tell them, "These bumps are neurofibromas, you see, I have a genetic condition known as Neurofibromatosis. The bumps could continue to grow and become cancerous and I could die". I love the reaction I get after I say that!
BTW-the cancer part is not true; none of my tumors are plexiforms.
My husband of 11 years loves me and says he doesn't see the lumps, I think then he must be Mr. Magoo!
My prayers and love goes out to yu!
Actually, I've only read of one, just one documented case that MPNST in an NF patient came from a non-pleciform neurofibroma. So yes, it's only plexiforms that are risky, esp the internal plexi's close to major nerves/network of nerves.
Plus, multiple NF doctors, and NF researchers have published, and have personally told me MPNST in NFers arise from preexisting plexiform neurofibromas, not de-novo, not from dermal neurofibromas.
Some skin plexi's can look like a typical dermal neurofibroma from the surface but is only the tip of the iceburg with more internally.
There really needs to be better differenciation on education about MPNST risk... It's getting better but seems it'll be a while before it becomes a wide known knowledge that 40% of NFers have plexiforms which leaves the other 60% with lower chance of MPNST than the 40% w/plexi subgroup.
One saturday we were really busy and the fittng room actuslly had people waiting for an available room, and I seen the security guards on the floor more, (and one was by the fitting room and he stooped down as though he was hiding and was looking out in the main floor area and one of the customers had came out to exchange some of the dresses she had to try on other ones and whispered to me, "isn't he an obvious security guard" and laughed. The fitting room was now back to normal when a lady carrying a huge pile of clothes (I could barely see her eyes) came to the front of the room and I was helping out the previous woman who just got finished trying on her dressesand she as sorting what she wanted and did not want on my desk when I told the woman that came to the fitting room that she was only allowed to bring 4 pieces of clothing at a time. She brought down her clothes and Schreeched' "YOU HAVE NO SOUL" and her friends heard her and came to see why she was "Scared" and they looked at me and (eveyone looked as though they seen something that scared them) and the 9 other people she was withleft what ever they had in their hands or cart and got out of the store.
The manager & security guard came up to me and said "what did you say to her?" I said "All I said was she was only allowed 4 pieces of clothing & she looked at me & told me I had no Soul."
The customer (with the dresses) grabbed my wrist and said "at least she has a pulse."
The security guard said why did she say that oh because of those bumps manger said she has NF and security guard said Good thing you have that nf today we were watching them
Customer said We know we seen you and you were not doing a good job of hiding the fact you were a security guard. And she gave me a hug and said "don't let the nasty comments that that woman or security guard hurt your pride, you are a wonderful person. and she left.
But I still get rude comments even today and yes they can still hurt. no man can deal with my bumps as I am told life is hard to be by yourself and I only have a few close friends that dont care if I have NF