u/IllNarwhal7980

hello everyone im a 23F and i have neurofibromatosis type 1, it makes tumors grow on my body (can be internally or externally) so there are some bumps visible on my body (arms,chest,back etc) there is no cure undortu for me, before tbh i didnt care about it but now im becoming more self conscious and just insecure, im scared to wear the clothes i used to wear because of my bumps and some cafè au lait spots

its just so hard there is a community with people with the same situation and ive seen some worse cases, that makes me eve more scared for my future and tbh i dont know how they do it continue living knowing it could get worse and seeing oneself infront of the mirror or just seeing your body in general

i dont know how to continue living anymore and find something positive about this, i just want to end it all, ive been very suicd these past few days

im still trying to learn about nf but can you plexiform growm internally and like not visible? can they also grow around your 20s?

sorry if the question sounds stupid

this will probably my last post for a while (after posting a Bunch here lol I'm sorry), because I'm planning to stay away from social media for a while, makes my mental health worse, but I just really wanted to ask especially to those with visible neurofibromas how do you guys do it in life, like continue living and being positive and not getting scared of what other people have to say and knowing that nf is progressive and it will get worse

I don't know if I'm the only one but these days I've been feeling very self conscious (23F), and been wanting to end my life, I know I shouldn't let my condition define me but its hard you know, seeing everyone with normal skin (friends and family) so I would really appreciate some words of encouragement and stories of you guys, how you keep going in life

thank you so much

as a girl who loves dressing up, i just hate not being able to wear anything i want because of my bumps i hate having to cover up for something i cant control

hello everyone,

i am a christian i go to church every sunday i pray everything and sometimes do my devotion, i have this progressi disorde/illness that makes tumor (non cancerous but can be) grow on my body (can grow eveywhere) its called neurodibromatosis and there is no cure because its on the genes, this sickness really makes me insecure i have bumps and spots all over my body, and i have been becoming very self conscious, i feel guilty but sometimes i do question him ”why me” why did i have to suffer this, i do believe in miracles but with mine i dont know tbh cause its also on my skin can he even heal me, what way? i just want to end everything but i know its a sin, i love the Lord but it just hurts so much

im 23 and im scared i feel like my fibromas just keeps getting many or maybe they were the old ones and just paranoid, im just scared and sad cause some people during their 20s didnt even have any visible fibromas but i have some on my arms,jaw, shoulder, back and chest already im so broken