to my fellow nf warriors who have visible bumps / visible many bumps on their body, have you guys ever tried online dating? did it work for you guys? and if yes how did they reacted after seeing your body with neurofibromas? (hoping it's all positive)
you guys ever had a bad encounter? like people maybe saying things about your nf or like saying something after you walked past by them or just hearing them say something bad or mean? how did you deal with it, did you ever forget about it?
hello strong nf warriors, just wanted to ask how do you guys started loving yourself despite the visibile bumps or cals on your body? what are some tips you can give to the fellow people?
how to feel pretty and stop comparing myself, my skin to other people
thank you so much ♥
i’m 23F NF1 and my nf is already visible unfortunately for me…and i have been single my whole and tbh one of mt biggest fear other than nf getting worse and like having more complications , is being alone forever
so my question is to my fellow nf1 warriors where theie nf is also very VISIBLE like please respond if its very visible and not like only a few did you guys find love?
is it really possible for us to find love? should i just go out there even tho have many bumps on my chest and hack, some on my arms or face..should i not let my nf hinder me..what if they will find me disgusting
hello, how is everyone? how has life been treating us nf warriors? does it get better? especially to those who have visibile fibromas how has life been treating you, will we really able to accept our appearance? will I ever find love? a job tbh im more scared of this one I'm 23 and have some visibile fibromas already and I'm at uni I'm so scared I wont be able to find a good job because of the bumps
about love I just started to not care...idk if anyone will ever a person with bumps
but does it ever get better? will the fear always be there? will I forever be disgusted by myself?
at what age did you guys notice your fibromas getting worse? 20s? more?
by worse i mean you already had some fibromas but they you keep on noticing new ones popping up
i posted this the other day and here are some pics of the fibroma, like if you can see i circled it on some pics and you can see the flatten fibroma and then on the other pics it wasnt there yet, one of the pics are like taken only a few days a part so this fibroma is def new, i’m just so scared and sad like ols just leave my face alone
this happened this morning, okay tbh I know Im also in the wrong I admit it, but I don't know it was an excuse for what my "grandma" did to me (I don't even know if I should still call her a grandma), so when I woke up I noticed that she left our door open while she was cooking so it was starting to smell inside our room, and I got a little annoyed so I kinda closed the door like slamming it, then I got up went to kitchen then she entered our room again and forgot to close it again so again I slammed it shut again, and. what did she do? she opened our door and slammed it shut too, THEN then she was in her room she started saying very awful things loudly for me to hear them.
" shes so ugly and acts like she's all that" LIKE why did she attack my appearance???
" her room isn't even that good and doesn't even smell good"
"stupid" like????
and I did kinda responded back talking about the awful things she said, acting like she doesn't go to church (not very church like attitude), because I think what I said is true
like please tell me these comments aren't under the belt? I don't think you should say things like to someone, especially to a family member, and did she forget im here grand daughter..
I really want to cut her off and not treat her like a grandma, am I bad if I do that?
im so hurt by all the things she said like i’m already so insecure with myself then i hear words like that from her
I feel like im getting new ones every single day and im only in my early 20s, is It perhaps because of the things I eat? stress? hormones (i'am a girl), idk maybe sleep?? ive been sleeping very late these past few dats, I don't understand why it's happening I'm so scared
sorry for asking too much, and if this question might sound stupid, I just really want to start taking care of myself and learn more about nf1
but has anyone tried mediterranean dite, and how did it go did you guys notice some changes? also I saw that mediterraneanstyle diet helps reduce inflammation so its like an anti inflammation diet what does that happen? with pain? I Las research that inflammation is connected to tumor growths? so will it help MAYBE slow it down? also what about cutting sugar?
also are there any tumor inducing foods, I should try to avoid?
im only 23 and tbh im so scared that I will be covered once I get older, because as of rn I already have some visible fibromas, and I keep on seeing other people who are my age or who are even older than me that don't have even visible fibromas, like I have a few on my shoulders and some of those people near my age don't, I have like on my jaw and small one on my face and then don't I know nf affects us very differently, but im so scared...
this happened this morning, okay tbh I know Im also in the wrong I admit it, but I don't know it was an excuse for what my "grandma" did to me (I don't even know if I should still call her a grandma), so when I woke up I noticed that she left our door open while she was cooking so it was starting to smell inside our room, and I got a little annoyed so I kinda closed the door like slamming it, then I got up went to kitchen then she entered our room again and forgot to close it again so again I slammed it shut again, and. what did she do? she opened our door and slammed it shut too, THEN then she was in her room she started saying very awful things loudly for me to hear them.
" shes so ugly and acts like she's all that" LIKE why did she attack my appearance???
" her room isn't even that good and doesn't even smell good"
"stupid" like????
and I did kinda responded back talking about the awful things she said, acting like she doesn't go to church (not very church like attitude), because I think what I said is true
like please tell me these comments aren't under the belt? I don't think you should say things like to someone, especially to a family member, and did she forget im here grand daughter..
I really want to cut her off and not treat her like a grandma, am I bad if I do that?
im so hurt by all the things she said like i’m already so insecure with myself then i hear words like that from her
i hate nf1 so much probably the most disgusting condition ever, because why do tumors have to grow on my body and make me look different and disgusting and some people might think i‘m contagious and it might affect my future, what if i dont get a job, what if no one will love me and i hate that there’s a chance to paas to your kids too AND ofc its incurable and progressive
i hate this so much i want to die
sorry.
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