What is Neurofibromatosis
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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No serious symtpoms of NF1 and 21 yrs old
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I was just wondering if any of you have heard of a person just carrying the gene, or is it possible to go through life with out the lumps and bumps. I was diagnosed with NF1 when I was two based on the number of cafe ole spots, and my slightly larger head. However through the years of waiting for a can of worms to open I have had no other symptom. I am 21 now and have not had a single lump and although I am extremly grateful part of me is still worried about them randomly showing up later in life. I recently went to the docotr and had my eyes checked for the second time, no nodules. I am pretty sue my father has NF1 as he had cafe ole spots but just like me he does not have the lumps or bumps (that I know of). Because I havent met anyone else with NF1 and have utterly freaked myself out with the research I have done, I was wondering if anyone more familiar with the disease could give me their opinion.
Thanks, kara Posted on 10/09/09, 10:10 am |
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I know this is probabvly not what you want to here but i inherited nf from my dad he only developed neurofibromas in his forties and i have followed the same pattern, as yet my symptoms are very mild, but by the time he died aged 81 my dads was very obvious. I hope this helps.
I am inclined to take each day as it comes, i cant control what is going to happen so why worry. 
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I had one tumor when I was a teen. The next tumor I got was after my second child was born when I was 29. I am now pretty much covered with them. I do think it is possible to not get any tumors, at least I hope so because 2 of my four children have NF, but I don't know.
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Thanks guys (fingers crossed), the stress has caused more issues in my life than the nf itself, but I guess there is no point in stressing over something that has not even occured yet.
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I only had about two bumps as a teen. I didn't know that I had NF, I thought they were just birthmarks. When I was about 33 years old I was diagnosed and over the past 6 years I have several more probably in the hundreds, they are mostly under the skin and only visable in certain light. I hope that yours stays mild.
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Thanks I recently heard of Legius Syndrome or NF1 like syndrom in which a person has the freckling and cafe ole spots but does not get the neurofibromas, this might explain the reason why I dont have the lisch nodule and only cafe oles (hope so)
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I really hope you dont get these lumps. Because going threw life with these tumors, people can be very rude to you. I cant tell you yes they will show. But you never know. I had a friend that had the same and hers did not show until her early/late 30's. All I can say is God Bless you and keep on praying they wont show. God Bless and keep on smiling.
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New here, but, I was 49 when I found out I had NF.I have many cafe-au-lait spots but always thought they were birth marks.I have always had pain but, I have what I call innies s for none of my tumors are visible.However I have so many covering ever nerve ending on spine, legs and so on.I am in constant pain and take meds. to help.My birth sister has symptoms but no tumors in sight at all.I wish there were treatments out there for us.
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