Wow. I am kinda overwhelmed by finding this site! I never knew the name of my condition before my husband brought home the People article about PFFD, much less that there were so many other people with the same thing.
I am 30 years old with, I guess, bilateral PFFD. My right leg does have a kneecap and a very short femur. I only had one surgery when I was 8 to remove part of the growth plate in my right knee so that leg wouldn't grow TOO much faster than the left (where there is no joint or femur).
I have been very luck in that I can walk and ride a bike and do most of the things that "normal" people can do (except kneel or sit 'indian style'!) I do experience some pain in my back, hips and legs but it could be worse.
I am totally down with the idea of a meeting of some sort. I live in Colorado, but would definitely travel for it!
Comments
conference
I would absolutely love a conference!! I think that as parents, caregivers and patients, we could all benefit from eachothers expieriences and knowledge. The fact that this is a rare birth defect with little known cause that is now publicised ( people magazine) brings me new hope about my daughters condition and the medical advances that are taking place each day.
kaylas proud mommy- Tara