Neurofibromatosis Support Group

I was diagnosed around 30 and I only had a few bumps . I am now 37 will be 38 next month and I get more every year but I have noticed an even bigger increase in the past 6 months but I stll considered myself to have a mild case. I had all my large ones removed but I have the small ones left and they seem to be in clusters on my hands and my face and some others scattered under my skin. The ones on my hands and face have increased in size ,still small but more noticeable. People are starting to notice asking me "What is on your hand?" From what i hear from others I think that it does progress a lot in your 30's & 40's.

My doctor told me that when I was pregnant, that the NF bumps would increase, and he said that it was from the hormones, that our hormones make them increase in size and growth,

They are so right. Hormones do affect tumor growth. I had low testosterone levels a year or so ago, and started taking injections every 3 weeks. a few months later I noticed (yup, you guessed it ) more %^$*% bumps. So, I stopped taking the injections, but the bumps continue to populate my flesh. Life sucks.

Most of my bumps came after pregnancy. I got a couple when I hit puberty, then after my second pregnancy I go so many, it looked like a rash.

I started to break out in the bumps when I became pregnant with my first and noticed more with each pregnancy, haven't seen any more in 9 yrs! except 2

I have always heard that hormones play a big role in the growth of the bumps. So, have they done research on hormone suppression or hormone manipulation to combat the tumor growth?

My pregnancy is what led to my dx and the most change. I turned 50 back in March and menopause also brought more bumps.

Hi, I was diagnosed at age 8 I had little lumps and cafela spots. I had my son at 18 and it got wrose, he wasnt born with it. I had my daughter 3 years later and she was born with it. I understand your struggle with wanting another child.I read that during puberty and and pregnacy it get wrose. The older I get the more issues I start to have internal.