Neurofibromatosis is an autosomal dominant genetic disorder. Neurofibromatosis type I (NF-1), also known as von Recklinghausen syndrome, comprises, along with neurofibromatosis typ...
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Hey all, it has been quite a while since I really posted.
I sit in front of a computer all day so sometimes I need a break... Anyways I was wondering when most people noticed a shift or change in their NF. I really could have cared less about mine until after my son was born with it and I noticed I was getting a lot of little bumps you really can't feel but can see. I was wondering if there were any "rules" as that if you are mild until 32 are there chances for it to all of the sudden spread like wildfire? Has anyone ever noticed it getting better or that some bumps go away? Sometimes I feel that i got the lucky NF if there is any because I live a relatively healthy life, no issues really so I worry that one day it will rear its ugly head. and those that have children with NF is it close to being like your own NF? I just wish that there was some sort of guarantee that if it does not get bad by a certain age then you get a pass on anything happening. I guess that is wishful thinking. Posted on 07/08/08, 07:07 pm |
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I also have lots of small bumps that you can only see in a certain light - They started, strangely enough, when I was 32 and I notice new ones all the time. Though its not so bad at the moment. I have a few flatish pea size ones on my upper arm that people stare at so I am thinking to get them removed. I have had a dermal tumour one disappear, I had it for two years and it started to get flatter and one day it was gone. Maybe it was not what I thought it was but I am glad cos it was on my face right under my eye. The only thing I had just started to use vitamin C gel from the body shop. I am now trying it on other ones to see if they change. finger crossed 
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Hi Igggs...Missed chatting with you.
my nephew tells me all the time it looks like its clearing up in my face... and some of my NF turns to scabs on its own and gets flat (those are the small ones) I wish they would all go away.. and never come back.. mine got worse after I turned 30... I think stress, and the way I eat did that.. I remember there was a time where my NF was manageable and my self esteem was so high.. not my self esteem is like gum underneath my dirty shoes. I lie in bed not wanting to get up.. but I have to.... Im going to be in NY in Sept for a day to see Dr. Weinberg for a consultation to have some NF removed. I cannot wait....I just want to get enough off where I can feel comfortable and wear short sleeves
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my son has alot of complications due to nf but most people do not know his dad has it. the drs usually say that if you dont have any major complications before age 12 then you probably wont. but its my experience that the body is strange and unpredictable and anything and everything can happen. in an unremarkable pregnancy you can get growths (ie skin tags, moles)due to changes in hormone levels and increase in growth hormones. with nf any time you have an increase in cell production you can see tumors. so it is probably due to your pregnancy. just be sure to watch for pain or an increase in size. i hope this helped. good luck!
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