Neurofibromatosis Support Group

Neurofibromatosis is usually noncancerous. There are three types of this condition. Type 1 usually appears in childhood, while Types 2 and 3 appear in early adulthood. Type 1 can cause bone deformities, learning disabilities, and high blood pressure. Type 2 can cause hearing loss, vision loss, and difficulty with balance. Type 3 can cause chronic pain throughout the body....

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Talking about my NF

deleted_user
deleted_user
I have a problem telling others about my NF. Looking at me you would notice the NF. I have the caf au lait spots, but they are on my chest, back, and upper arms. Clothes cover them. I don't have a problem getting a date, I am a decent looking guy, but I don't let the relationship ever get serious. I don't know how to tell the girl about the NF. I guess if I can't really accept the way I am, how can I expect someone else to. This really sucks. I would like to get married one day, but I always break off my relationships before they get too serious so I don't have to tell anyone about the NF. How and when do I tell someone I am dating about this?
deleted_user
deleted_user
I tell people pretty quick and most people do not care.
I have a lot of itty bitty tumors, but nothing that really stands out.
I have a lot of spots too.
I don't really let anyone close these days but for other reasons other than NF.
I tell people though that I can't have any more kids....
I do want to remarry though.
Take it this way, if they judge you for it its their loss anyways.
deleted_user
deleted_user
Yes its kinda tuff I don't talk about my NF if they do not already know even if they do its kinds hard for me i have alot I think on my hands and arm so I try to wear long sleeves. When I first started dating my husband 10 years ago I told him right off it was easy because my daughter who also has NF was going to have a baby and I was worried if the baby would have NF. You just have to come out and tell them some how.
deleted_user
deleted_user
I have to tell people quick, as I cannot hide my NF.I walk with a cane because of it and you can see a lot of my tumors both inside and out.They get so big you see the internal ones poking through your skin.It also causes pain and makes FM worse, so there is no hiding it.
I have lost people cause they don't want to deal with it.Those I am better off without.Give someone a chance and tell em if you really click with them.If they don't want to deal, they weren't worth it in the first place.
Hang in there, we all go though this to some degree, as you get more bumps as you age.Message me if you need me.
Hugs and prayers.
deleted_user
deleted_user
I happen to think when the time is right and you meet the right girl you will tell her. You will feel so comfortable with her you will tell her everything about you. It will shock you how easily it will be talk about it. Good luck
deleted_user
deleted_user
i was daTING MY NOW HUBBY(HAS NF 1 )FOR ABOUT A MONTH, WHEN I WAS TOUCHING HIS ARM AND FELT BUMPS...I WAS LIKE WHAT WAS THAT...HE TOLD ME VERY NANCHALANT"NF TUMORS...AT FIRST BECAUSE I DIDNT UNDERSTAND I THOUGHT IT WAS A DEATH SENTENCE...I BECAME INFORMED AND BECAUSE HE COULD CARE LESS ABOUT IT IT HAS NEVER BOTHERED ME......MY 3 YERA OLD HAS IT , YOU WOULD NEVER KNOW.....ITS A PART OF OUR LIFE, AND IF SOMEONE FINDS YOU ATTRACTIVE INSIDE AND OUT WHY WOULD THIS MATTER TO YOU.....
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