64 Year Old With NeurofibromatosisMy story is no different than any one else's who suffers from this disorder. I did not know I had NF until I was 21. I have had no health problems with my NF only the cosmetic ones. I am not really good at dealing with my NF and NF and I will never be friends. At times I feel very lost and can get really depressed. I know that life is not fair but I still ask "why me". I wish I could have the body I did when I was 18. I try hard to stay positive and be a good person. I hope one day I will be able to accept my NF and be at peace with it. I work on this every day. Just have not found the magical answer for me.
I was the first in my family with NF and I passed the gene on to my truly amazing daughter and she to her son. We are now three generations of people living with NF.
I hope one day there will be a cure.