I don’t think I’ve ever talked about it on here because it’s never really been a problem in my life, but I have something called neurofibromatosis (NF). In fact, I know so little about it that I had to look up how to spell it. Here is the definition from Kidshealth.org.
Neurofibromatosis (NF) is a condition that causes tumors to grow on nerve tissue, producing skin and bone abnormalities.
Anyways, everyone has different probelems/experiences with it. I believe this can range anywhere from a few tumors and spots to HUGE tumors all over and major learning delays and in a very small percentage, cancer. What generally causes the problems is that the tumors grow. Mine have multiplied but have not grown. Mine are also only on the outside and we have not found any internally.
How am I affected? Well, every time I get pregnant I get more fibromas/tumors on parts of my body that are generally covered. (back and stomach) They seem to go away afterwards but not all of them.
Years ago I only had one on my stomach and my doctor actually thought it was a keloid. Years later I noticed 3 in a row on my leg, so my then doctor tested the tissue and it came back as being NF. I believe he said it was NF1. What prompted him to check? The “keloids” in addition to multiple cafe au’lait spots. (little-big brown spots). You can see the 3 spots and a cafe au lait spot below. You can also see several tiny spots near the cafe au lait spot that are not always there.
May was/is NF awareness month and I wanted to do a post earlier, but I forgot. That’s how little importance it is in my life. I know there are many out there that are DRASTICALLY affected by it, so I wanted to at least mention it.
That and at Lucas’ last doctor appointment it was suggested to see a geneticist based on the number of cafe au lait spots found on his body. Will doesn’t have any. I’ll keep you updated. Let’s hope his is as mild as mine :).
I appreciate this post. I don’t have NF but I do have MS and I know how being a mom & having a disease can be a challenge but Youbare a great example of a strong mom! Kudos to you.
I guess we all seem to have a challenge or two. NF is a new one that I have not heard of but glad that you are educating us
Kim @ Stuff could….´s last blog post ..My MS TShirt
Thanks for sharing this Priscilla. Glad that it’s only minor in your case. Hope Lucas will be in the all clear!
Alison@Mama Wants This´s last blog post ..VlogTalk – a Vacation to Remember
I got NF here my story seems is not long lol
i used 2 have pains from age 4yrs old when i was 21 and a half i DEMANDED tests as they kept saying its growing pains thats all. when i was 21 and half like i said BULLSHIT its not now sort it!!!
Jan 2011 i had MRI on leg. nothing came back but a small growth on my knee. nothing to worrie about. i had to go to physiotherapy and it was them who said it looks like i got scoliosis and so i had MRI on my back by FEB 2011 and then then march i had to have anther as they found lumps i thought OMG i got cancer as all i got told is they found lumps.
April 2011 i got told i had NF and well still going through tests now and its SEP i got to wait till NF unit in Oxford contacts me :'( got to wait 6months!! that makes me angry BUT life. so i guess thats my story like said short and simple!!
WHAT date in may is NF awareness as i only heard about NF when i got told i had it 🙁
lisa_NF´s last blog post ..Pflugerville Fires and more
I was told I had NF1 as a child because my dad has NF1 and NF2 and I have the cafe au’lait marks. I’m 26 now and I have one Fibroma on my belly thats the size of a pea and its flat. I’ve noticed lately a couple of purple/pinkish marks on my back and chest. They havent turned in to Fibromas it just looks like my skin is a different shade. Is this the start of the Fibormas? as they dont look anything like the one on my belly.