It is normal to feel depressed at times when you
have to endure what you are dealing with everyday.
I do not have NF but my daughter did. She was diagnosed at 5 months old. She although for most of her life did not have really much external neurofibromas she was still at times very self conscious of her appearance. She had a plexiform
in her buttocks and pelvis/sacrum area. She would
never be seen in shorts or bathing suit, even some dresses and pants that would show the area.
She passed away in July her name was Ashley and
I think of her each and everyday. I hate NF because what it doesn't do physically it does mentally to your self esteem at times. We live
in such a shallow society based on looks so as
we either get older or have something that looks
different than "normal" we find ourselves feeling
inferior. I hope that you are speaking to someone
about this. I think it is as important as the physical evaluations to take care of your state of mind. As I have said I can only imagine how you feel because I know what I have witnessed and
I want you to know you are not alone or crazy or
should even question your sadness at times. If you
ever need to vent I am here for you. I know
you do not know anything about me or who I am but
I am a mother and I understand NF all to well. If
you want to get in touch w/me antime just email me. I started a foundation that you can visit at www.ashleygraziano.com
and will be traveling the country fighting for more money for research and
speaking about awarness to others. Your not alone.
There is always someone for you to talk to.