I really do not know much at all about PFFD other than that my girlfriend has been trying to figure out why i am the way I am and discovered PFFD. I was born 3 months premature to an insulin dependent diabetic 17 yr old mother in 1977. I had cleft palate deformity and problems with my lungs and no thighs. i am not sure if they knew about the thighs at the time due to all of my other problems. Both of my parents, being teenagers did not want to be saddled with me and split up within a year of my birth leaving me with my wonderful grandparents. I did not leave a hospital for 3 months. I actually never knew what was wrong with my legs other than that i had no thighs. I now think though that PFFD is what I have. Nobody in my family actually discusses my disability and treat me as just normal but short. Shriners wanted to amputate my feet but my grandparents just could not bear to do that to me. And so today I stand 4 ft about 4 in. and have a bit of a side to side walk but otherwise I am just fine. Of course over the years I have dealt with lots of cruelty and still to this day I shudder when lots of children are around. I have been laughed at and called midget for so many years that I just always had a glower about me. That is til I met my wonderful girlfriend. She has really brought me out and made me see that I am indeed a good valuable person, just a little short. I am a machinest in the Houston area and have several specialties where I work. My wrists and arms do not turn like other peoples. I assume it is the PFFD. I have small hands with nice long fingers and can get into lots of places most larger men can not. That makes me a good mechanic and a good auto repairman. I live a normal life and just try to keep a stool handy at home so that i can reach my shelves. Sometimes I get tired of the poking and whispering behind my back.. but life must go on. You will also be glad to know that I am now close to both my mother and father, but never as close as to the grandparents that gave me such a good life. I would like to be able to reach out to young people and try to help others with the same problems I have. I also would like to hear from others and to know that indeed I have PFFD. I have no thighs on either leg .. my knees are about where my thighs would be. I was given last rites twice as a newborn and my parents and grandparents were told I would never live to adulthood. I did live . They were also told that I would never walk or be able to function as a regular person. I do indeed walk , slowly , but walking all the same and I function quite well as a normal person. I just want all of you young people out there to know that i am doing fine with my disability. I finished school and did some college... have been married and divorced.. have dated .. have worked .. all in all I have lived a good ordinary life... I feel that all of us with severe disabilities should be commended for living good ordinary lives. People with no disabilities have no idea how hard it can be to live a normal life with a disability. I suppose in a way that makes all of us extraordinary for being able to fit in with the others. Anyway I hope to hear from some people and hope to know once and for all if PFFD is what I have. Most people around here just think I am a midget and I have never told anyone but a few close friends and family about my lack of thighs. Thanks for the time and for letting me be a member.
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Doing fine at 60
I, like you, have no hip sockets also. I am only about 3'4" tall. I also only have one arm. You can see pictures of me on my blog here on this site. I also never knew what my condition was called until my daughter showed me the article in the People magazine. I am 60 and am still in very good health. I am also still working too.
I also am married for 38 years and have a daughter. Nice to see you of the site.
Duane
Welcome!
Hi, southerncritter! Welcome to the PFFD site. I'm 32 as well, and it sounds like you have bilateral PFFD like me and some others on here. I'm 4 ft. 5 in. tall and since the age of 28 have walked with forearm crutches to help ease pain caused by arthritis undoubtedly caused by PFFD and the malformation of my joints. I also use a wheelchair for distance. I have congenitally short femurs on both legs. On the right side, my hip joint is malformed; the femoral head is shaped like a bullet instead of a ball and doesn't fit well into the socket, and on the left the femoral head is completely absent.
When I was born, I had a one inch difference between my left and right legs. That grew to be more than 3 inches as I grew, and when I was 11, I had a leg lengthening operation (don't get me started on that one; it caused more problems than it fixed, but my parents and I made what we thought was the best decision at the time).
Like you, I've lead a relatively normal life. I understand what you mean about being around children. I'm a teacher, so I've had to deal with that A LOT. On the first day of school, I explain to all my students what my disability is and I show them pictures of me at different points in my life. They are usually fascinated and grossed out by the pictures of the leg lengthening. I then give them the opportunity to ask any "respectful" questions that they may have. I teach high school now, so the kids respond pretty well to it. I've had a number of parents comment to me that their kids have talked to them about it. I did teach elementary at one point, and I did the same thing with the little kids, just explaining things a bit differently. However, there would be lots of times when kids in other classes would point at me or snicker. Usually, I would just walk up to the child and ask, "Do you have a question you want to ask me?" The normal responses was, "Why are you little?" I would tell them that the bones in my legs aren't formed like theirs. That was usually sufficient.
However, it's really frustrating when you go out in public. Sometimes, I'm just not up dealing with stares and pointing.
I hope you find lots of support here!
Linda
A few more things
I forgot to add a few things :)
I was also born to an insulin dependent mother and was born 1 month prematurely. There are some stats out there that show a higher incidence of PFFD in mothers with diabetes.
Also, there is a Facebook group for PFFD. If you have a Facebook account, you might want to join!