Extremely depressed
Hi NF friends
Sorry for this post but I don’t know what else to do.
I hate hate hate having NF1 so much.
I’m in my 30s and struggling so much with the cNFs. This, from what I’ve seen in other posts, appears to be the biggest struggle for us. No pregnancy yet, yet I’m visibly covered in the tumours. This probably started around late 20s when more started coming.
How do you all cope?? Seriously, I don’t know what else to do. Knowing it will get worse, and there is nothing I can do to stop it.
I can’t find any clinical trials that seem to be ongoing either for this which makes me feel completely hopeless and helpless for the future. Like, so once the bumps pop up on your body, you’re screwed basically because removal is cosmetic? Then what else are we meant to do?
Anyway - point is, how do you do it? Would it take someone to end their own life due to NF1 for more action to take place? Sometimes I wonder this.
Thanks