Living with Neurofibromatosis: My Story

You deserve better than your husband. I am 28 and have lived with an NF diagnosis my whole life. I have never been in a relationship but have always hoped for one. I have one large NF tumor on my face that has caused blindness in my right eye. Despite that, I am a full-time kindergarten teacher and home to be a mother someday.

I have found it very hard to be in a relationship because of the NF. I was and still am legally married but we have been separated for almost 5 yrs. We have a 8yr old son together.he was tested when he was younger but the test came up negative for him with having NF. The guy that I am currently dating also has NF. So he understands what I go through on a daily basis. I am applying for Ssi due to my NF but also other things that I have been diagnosed with because of the NF. Its so hard because people stare etc. I have been told so many times that I am not pretty etc.

Worth your time*

Don't let it hold you back! It's something you can't control and hopefully you can find someone understanding of that! If they aren't then they are not worth your advice. I know I'm not a good example of that but do as I say, not as I do.

Hey, I’m 27 y/o, having NF ever since I can remember. I have the same presentation - skin discolouration and tags. I’m single now and I’m scared for when I find someone and have to tell her about my disease. Thank you for sharing your story, what your husband has told you is disgusting, and he’s not worth you!