Hi, I am 22 years old, and my sister who is almost 18 years old was diagnosed with NF1 since she was borne.
she has the cafe-au....spots all over her body. she has a curvature of the left tibial bone. and now there's some probable nerofibromas all over the body barely developing, but they are not seen yet, you just can feel them, but you cannot see them. are they going to grow?
My mother and I have lived a life crying for her, just the two of us, because we haven't had the strength to let my sister know what she really has. well, I have just respected my parent's decision to know tell her yet. My mom believes that if we tell her, the disease it's going to develop more, and she will get depressed.
She is a very quiet pretty girl, and we don't know what's awaiting for her. It has passed 18 yrs since I know about her disease, I have observed how she develops, and every time I see something different, my mom gets sad, and I do too, when I am alone.
Sometimes, I am very afraid. And all I can do is pray, as we always do. I don't want her to suffer.
Will her disease develop more with age? or pregnancy? is there any psychosocial factors?
She is fine right now, with no other signs that affects her self-esteem...since she always wears jeans so, nobody will see her bent bone (she used to wear a cast, but she decided to take that off permanently a few months ago, since her bone is apparently strong), she wears enough makeup to cover as much as she can the freckles on her face, and just ignores the cafe spots all over the body, because she thinks they are just moles.
should we tell her? how? when? I love her very much...