Personal Stories

Hello there, my name is Patrick Stewart and I have upper PFFD. I know that the condition is not genetic since no one else in my family has ever been diagnosed. Recently though, I have discovered that my girlfriend is now 8 weeks pregnant and I am extremely concerned that this will be passed on to my now unborn child. Please someone let me know your thoughts and feelings. If anyone is out there with PFFD and has had a child, PLEASE let me know if they were born with or with out our condition.

I started this Internet search in hopes of finding other parents like myself to learn of ways to help support my son. Turner is my first child, and his PFFD was a complete surprise. He was 2 weeks early, born 2 days before Christmas 2003, beautiful, and otherwise healthy. His condition was so sever that he was born with only a small footpad and two toes. He saw many doctors while in the hospital and no one could tell my why or what was wrong with my son. My father-in-law is a member of the Masons and immediately went to work setting us up with Shriners.

Hi,
I'm just curious to see what those who have had the rotation plasty done think about it. I'm sixteen, and we've run into several complications, and I'm now leaning towards the procedure. So what's it like? Do you limp very much? How active can you be? What do other people think? Can it get painful? What's it like to have to wear a prosthetic every day? Any insight you can give me into your condition of living would be HIGHLY appreciated. Thank You.
-Zach

Hello everyone, I really would like to thank all of you for the advice. Since the last time I was on here, we have seen several specialist, the last place we went was to Shriners in Shreveport, La. everyone is basically telling us the same thing, that amputation would be best for her. they fitted her with a shoe and a lift which is working great right now. but I know that we will have to make a decision for her soon. We have talked to several families that have had the amputation done and they seem to be very happy with their decisions. I am just not very sure...

Hi my name is Julia, our family lives in Australia.
My Son Christopher turns 15 today, he has unilateral PFFD. I have only know the correct diagnosis for over a year, and only found out while we were searching for information on Van Ness Proceedure.
Christopher has met other kids with limb differences but no other that has the same or closely the same as him, i suppose due to our smaller population.

During the scan of the second trimester of pregnancy a doctor at the Arnau Hospital (Lleida) detected a dysmetria in her left femur. This was further confirmed by another scan at the Val D’Hebron Hospital (Barcelona). As parents we wanted to know how it was going to develop. A traumatologist spoke to us of a process called “lengthening”.

In May 2003 Laura was born. She was diagnosed of a congenital short femur and hypoplastic of the left fibula.

CJ was born with PFFD of the right leg, severe. We did not know this until he was born. During my pregnancy I had 3 sonograms, but none of them revealed this. In fact, when he arrived, the nurses wrapped him so that we could not see. I happened to ask "Does he have all of his parts?" thinking that was a cute way of asking if he was ok, but nobody answered me. I didn't think much of it because he looked beautiful from what I could see. After 22 hours of labor, the nurses took me away to nap for an hour. When I awoke my husband broke the news to me, and it was difficult at first.

My name is Zachery, and I'm almost sixteen years old. I've lenghtened since I was two, but recently, I've run into severe problems. My femur was removed years ago to make room for a prosthetic that didn't work. Paley assumed we would be able to put in another prosthetic, but for that to MAYBE work I'll need bone graphs. I also have a fixator(that's loosening and falling apart) that's been on for over a year, that can't be removed until the prosthetic goes in in at least two months. I wonder, is it worth. I'm considering a whole leg amputation for once in my life.

I just wanted to say hello to everyone. I've read so many personal and very intimate stories here I felt like it was my turn. I have a beautiful daughter with PFFD she is 8 years old (will be 9 very soon) Unilateral, rt leg, class D. She had Rotation Plasty at age 2 at Shriners Hospital in Portland, Or. She is absolutely amazing and very well adjusted and happy. Although I knew a time would come when she needed more support than I could give her and it seems that time is now.

I've found that not every prosthetist is capable of dealing with a PFFD residual limb. As we all know, there are many issues to address for us... unusual limb shape, alignment, joint issues, etc... I finally found a prosthetist that realized he had to align my prosthesis differently than standard above knee amputees. Getting your knee center even is particularly tricky!