Personal Stories

We are new to this sight, and very happy to have found it, we are in the process of adopting Alena, she has severe bilateral PFFD. She has no hips femurs or knees. She has had surgery to correct bilateral club feet, and had surgery to fuse a partial knee tht was in the hip area. She uses an electric wheel chair for school and outings, can stand, but walking is very difficult, she is very heavy set, runs around on all fours, has the cutest skip, and stands on her head.

My sister told me I should check out this site because I was born with BPFFD. I am 31 and a wife and mother of two beautiful children. Here is my story. I was born in 1977 with this birth defect that the Doctor attributed to a morning sickness medication that my mother took while pregnant. My femur bones are very short, and I am missing the ball of my right femur. I am 4 feet nine inches!I have never had any surgeries because my only options were the lengthening or the amputation of my feet just to make me taller.

After reading a recent People Magazine article featuring 2 young girls with PFFD, I finally learned the medical term for my Dad's shortened leg. I am thrilled to see a support forum for people with limb differences. When my Dad was born in 1918, no specialist had ever seen anything like his shortened right leg (his knee was essentially at his hip), and I am fairly certain that he never met another PFFD patient in his life. The doctors told his parents he would never walk, but he did, for 88 years.

I thought you'd like to see a video of my daughter riding her bike. We use an "extension prosthesis" - what some call an "prosthosis" or a "Moseley-type device." The ankle is hinged and it allows nearly full mobility which she uses when riding the bike. The small length of the pedal arm means that she can use her shorter femur to lever the pedal.

http://www.pffd.org/sites/pffd.org/pffd_files/r_pedal.avi

hi everyone my son shane is 1 year old when I was pregant with him they thought something might be wrong with his legs but when he was born nothing was said at 3 months I noticed he held his legs very weird and his feet and hips stayed turned out when I took him to the drs for his shots I asked them to check it out they didn't think anything was wrong I new different asked for a specialiest they sent me to an ortho at first they thought it might be hip dysplasia but after x-ray found out his his left femur was shorter then right dr said lets wait and see I know he is not as effected as so

Hello everybody,

I want to share some more pictures of my e-mail friend Julia.

The pictures show that one can be a strong, confident and beautiful person in spit of having a handicap like PFFD

Regards, Steph.

My PFFD affects only my left leg. Unfortunately though, I have no knee. Right now I'm about two inches short. Can anyone in a similar position drive a stick? If you can, is it overly difficult for you? How exactly do you do it? Thanks.

Having a child with a birthdefect has really opeded my eyes. Before I had my son I would say things like "I couldn't deal with something like that. (birth defect, mental contition,ect.) God knows that. Thats why he gave my two healthy children. (My first two)I wouldn't be able to handle it any other way. It takes a special person to deal with that" How silly of me! now I feel ashamed almost for thinking that way. I CAN and WILL deal with it. And that doesn't make me some unbelievably strong individual. It makes me a mother.

I am new to this site. I am a 64 year old married woman and because I have no computer, my niece is doing the handywork for me. I am hoping to find someone to correspond with who also has bilateral PFFD and who is close to my age to exchange ideas. I am so glad to have found this site and look forward to hearing from new friends. I also am here to tell all of those families with PFFD that one my age is still going strong and been blessed with an extremely happy and fulfilled life.
harrist

My husband and I have a video on youtube. If you go to www.youtube.com and do a search for 'Joseph Merrick', we're on the first page. You'll see little hands on a piano. We play under the name 'o my machine'.