u/SeriousMarsupial2187

What are the chances of severe complications. I know NF affects people differently even in families etc. I’ve recently seen people share stories in a Facebook group and I’m really concerned. People sharing about diffuse lung disease, or people dying due to tumors being cancerous. I’m so horrified for the future and developing these complications, or my plexiform rapidly growing and turning into an mpnst or one of my children getting mpnst.

⚠️ DISCLAIMER : MY FRIEND IS NOT ON SOCIAL MEDIA AND HAS ASKED ME TO ASK THIS COMMUNITY FOR ADVICE!!!!!! I have permission to share what I have shared/ this is the info she has given me⚠️

I know each person has different manifestations. My best friend I met right out of hs ( ironically met at our workplace) has ZERO cutaneous fibromas like not even one. i don’t know even think she has any of those purples spots / internal fibromas things.

She did have a brain tumor removed at 16 years old due to seizures and she’s legally blind. I believe it’s probably nearly impossible for the tumor grow back. She has 2 kids and hasn’t passed on NF yet. They’re 2 and 9 months and she’s pregnant again! Due at the end of the year The had a couple of growths on her thyroid but I’m not sure whether they were NF related or not? She never said

All that being said, she isn’t on this platform but has questions and has asked me to reach out. Hopefully I’m able to address them and get answers from you guys for her. She recently moved states and doesn’t have an NF provider there .

-Do I still have the same cancer risks as anyone with NF since mine is mild ?

- Will I ever grow visible tumors since I already don’t have any?

- is it likely il never pass on NF because I haven’t yet?/if I do will my children have it mildly like myself?

-since I’ve been mild for so long with pretty much everything , am I in the clear? Hopefully someone can answer these and relate ?

I hate the stigma around NF, and support groups The feeling that it’s all “ doom and gloom” all pitty. Which lll admit I have been that person before. I get it we don’t feel beautiful or we have hard circumstances but I joined these groups to feel uplifted ( in a way of feeling supported) but since joining I feel nothing but fear and hopelessness. “ this sucks “ “ this is the worst” which yes it’s hard but I seldomly feel support

By uplifted I mean supportive. I’ve posted questions that don’t even have to do with what some people comment on my posts, they end up insinuating I’ll be vastly covered in these bumps because they are, or because they experienced cancer in a similar tumor that cancer will become my outcome etc.

Is it odd or abnormal to have a little bit of a bumpy forehead / chin / around my mouth before 30? These don’t look like different colored fibromas. The appearance is like grainy? I recall seeing people with this manifestation as a teenager at nf events, though they seemed much older. I feel as if I’m too young to have this facial texturing? Oddly enough it’s like on my wrists too.