Hello my name is Vicki. I am the girlfriend of Southerncritter who wrote doing fine at 32. I am just curious if PFFD is indeed what my boyfriend has. He has a very short thigh bone on both sides and his knees are basically up where his thighs would be on both sides. I find it odd that his family never investigated and tried to find out for him what he actually was born with. He has thought all along that he was just born genetically wrong and actually thought he was the only one like himself around. I happened on your site here and others and it seems to me that Jeremy has PFFD. I just do not understand the letters or other things associated with it. He never had any surgery or anything. He is a wonderful man who works hard for what he has and I love him dearly. I just want him to feel more like he belongs and is not all alone in the world. Also he has a lot of pain now when it rains, etc. He is 32 and he wonders if he will probably someday have to go to a wheelchair. He keeps himself in good shape to keep the weight off of his legs as much as possible. I was just curious as to how old the oldest person on here is and if Jeremy will need help later with his disabilitity. Any help or comments are appreciated. We are both so new to this and I just wish that Jeremy could have had support like this when he was young.. but maybe now he can have some. Thank you for your time and any comments.
Your post
I am 30 years old and I also, until my husband found an article in People magazine last August, that I was just a genetic anomaly. No one ever mentioned PFFD to me, even thought I went to Shriners hospital once a year until I was 15! I guess my parents just accepted me and tried to do what they could, but information is/was obviously hard to find. It felt really good to find out that I am not alone in the world.
I, also, have a very short femur on my right leg but I don't have one at all on my left. I have been able to walk, ride a bike and do most things that other people do. I, too experience some pain, more as the years go by, and worry that eventually I will have to resort to a wheelchair. I will try to be active as long as I can. I think that that has already prolonged my ability to do the things I want to do. I'm sure there is medical help out there but I doubt I could afford it and know I am too old for some treatments.
I'm glad Jeremy has found you and I hope that he, and you, can get information from this site and support and encouragement from the members.
Hooray! We're not alone in the world! That's got to count for something, right?