this is a pretty good small film on nf1.

it is beginning to be more recognized
and people are starting to actually hear about the disease.
many people never have and it is and has been overlooked by a lot of
doctors even tho it is one of the more common genetic diseases.

many do not have the disfigurement associated with it.
i was not diagnosed until i was 46, even tho i have the cafe au lait
marks and had a tumor removed from my thigh over a year before my diagnosis
that was found to be a neurofibroma.
i was told bu the surgeon that "normal" people can get them and not to
worry that i couldn't have the disease because i looked good.
i can't really fault him i suppose. it has been an over looked and
underfunded disease until recent years and even now
receives far less money for research and support than cystic fibrosis
or muscular dystrophy even tho nf 1 is far more common.
many do not know they carry the gene mutation, the symptoms are so mild yet they
run the risk of having a child with a really bad form of it.
or as the film states, it may just appear in a family with no history.


give it some thought and if you can not donate, just try to spread the word about
this, o.k?


me, i have elephants all over my home.i have 2 elephant necklaces!
it's my "screw you!" to the disease.

elephant man indeed!

to paraphrase:

"i am not an animal. i am an odd little poet!!!" ; )


thank you for your time. sherry