Neurofibromatosis

[Ginah]

I noticed the growth and progress of the bumps when I got pregnant. My doctor said is due to my harmones and it will dissapear after pregnancy, but it never go away---I got more and more of it--some just pop out like magic. Some, look like a dot and some are big enough to notice. I even noticed that after having x'rays--more bumps appears. I used to think that I am pretty growing up, but not sexy enough to wear a bikini due to some bumps I have already growing up. But, it didn't bother me then, because it was not that many---I still can look pretty and sexy in jeans and tshirts. I go out fine and happy. Then, one day, I fell in love and start to date and go all the way. I got pregnant and there I noticed the changed in my body--more and more bumps pop out just like that--like magic for most--some I can see it growing on my skin all over my body--not entirely just part of my body parts like forehead, neck, face, hands, fingers, feet, toes--never in the legs or stomach or back. So, it's kind of hard to hide them. Yes, I was ashamed having all this bumps. People of all ages stares, laugh, whispers, and make fun..So, I tried to dress up/bundle up just so I covered most of the bumps. I look good and I think I am still pretty--I am just bumpy and lumpy. NF is not good to have but I didn't ask to be born with it. And maybe if I knew that NF progresses when you get pregnant--well, I should have been careful but no one told me then and since I didn't have much of it growing up and being a teenager--I thought it would be nice to fall in love and have a baby. Well, I fell in love and have two kids with the man who came to my life and told me he loves me no matter what. We still together with our two kids--girl 14 and boy 12. I maybe ugly now because of the bumps I have on my body and my having born with NF, but at least I was able to have to beautiful, healthy babies. However, my daughter was diagnosed with NF when she was just born due to the 6 cafe-aulaits on her skin. My son is fine. So now, me and my daughter has NF1...So far, she only have cafe-aulaits on her---it increases in numbers over the years. Mine, is bumps---and yes it's not pretty to see for most people but I am alright..I finally have peace of mind. This is what we need---peace of mind and not let people affects us or get to us just because we have NF and they don't..We are all the same---human..

[SherryC]

I am almost 46 years old. I was diagnosed with scoliosis when I was in 8th grade. Not knowing that this was a symptom of NF and having a large cyst on the outside of my right arm I had the cyst removed when I was a teenager because it looked gross and my friends all made fun of it. I have had several pregnacies and I have one girl and one boy. They both have been diagnosed with nf. Both have the cafe-aulait spots. I have bumps from head to toe. I also have a problem with vertigo and wonder if this could be part of NF. I am no longer married and probably won't ever because of the bumps all over my face. I wish I didn't have this. I am the only one in my family that has it. Everyone needs to know that it worsens with pregnacy and with menapause.

[Ginah]

Hi, wow---do we really get uglier by the time we reach menapause. That's not so nice at all. Here, we are feeling all ugly due to the so many bumps on our bodies and come to find out we will get more and more later on in life. It's really too bad for us----we could never be beautiful again. But deep down inside us---we are nice and beautiful---if only people of all ages don't make fun of us/stares at us/ tease us/ whispers to others etc..we would be much better especially because we didn't ask to be born with NF..it just happened and we the unlucky ones but there's nothing we can do about it but to keep on living and moving forward and enjoy the life we have with our children and people who cares about us. I know, it's not easy to live with this disease because of the pains and aches, sufferings and other medical problems associated with it. It's really hard and sad for us especially when we don't have the money/medical insurance to help us get the treatment/help/etc. we needed. We all know, that it's very expensive to see a doctor and it's hard to find doctor's that deals with this problem. Yeah, some doctor's are even mean and rude and some of their employees are not so nice either. I think because we have the bumps and they probably think, we're contagious or something. Sometimes, I even wish I am contagious and so they will get it and let's see how they like it..I don't know, having this bumps on my body parts really makes me angry in a way and make me looks ugly. I can't wait for a miracle breakthrough. It would be nice if they discover a cure for NF--that way we don't have to worry about getting any more of it--and we have a chance to live a full and healthy life and so our kids don't have to go through what we been through. We want them to be happy and enjoy life--like we have in our earlier life. But, just because we are bumpy all over doesn't mean we have to give up---no, we have to stay strong and positive and continue to live. I think, we ain't that bad looking. We can look great, pretty and fine if we maintain ourself..So what if we have bumps, as long as we're okay and good---it's alright..we're alive and made it this far--so, let's keep on living and enjoy what we have now. And pray and believe that there's hope for us.

[Cindy Sue]

You are not alone. I have NF1 as well and I use to be pretty too. I am 45 yrs old. I got worse with NF, when I was 7 1/2 months pregnant. I look bad, and I get depressed easily. My daughter, also has NF1. She looks like I use to look. It's a pain to have NF, I hate it!! My mama died a month before my tenth birthday, it was also nine days before Christmas, back in 1972. I am 4'9" and my daughter is 4"7"1/2
We are porportioned correctly, but we get stared at alot. I wish you and your family lots of love & happieness in your lives. Take Care