If you are new to PFFD - I recommend starting with the PFFD book

three pffd babies meet

My three and a half month old son waylon had an appointment at Shriners in Sacramento today. I met Kalyn's mom Heather on this web site who also goes to Shriners in Sacramento, so we decided to meet there today. We introduced Kalyn and Waylon and we were introduced to a little girl named Galilia who is 19 months, has pffd and is walking with the aid of a prosthesis. It was so comforting to see other moms and babies with similar issues. We were able to sit and share with each other our stories so far. I am so grateful for this web site. We joked that Kalyn and Waylon would be boyfriend an

Forgot

I forgot to attach pictures of how I look nowdays.

Steph

Bilateral PFFD

I am a 38 year old woman with bilateral pffd. Both are Aitken class D
My legs have about the same length.
When I was four my parents decided that I had to have rotation surgery on both legs so that I could wear prosthesis. After the operation my legs and feet stopped growing and my shoe size is still a 12, 5 childs zize.

Unfortunally I did never succeed in using the prosthesis becaue I have no hip loints.so I decided to walk on my natural feet. I have a very waddling gait but that is not a problem for me.
I can walk short distances in and around the house without support. Outside I walk with two short crutches or use a wheelchair.

Shoe Lift

Hello. My daughter just turned 1 two weeks ago and she also got her shoe lift and AFO brace. The lift is about 7 cm. Since she was about 8 months old she has been pulling herself up to standing and using the furniture to "cruise." Well, whenever I put her shoes on she does not want to stand up -- she prefers sitting. WHen she does stand, she still tries to bend the knee of her left leg (her longer leg), which she normally does without the shoe on. Well, this frustrates her as now her legs are even with the lift and she is not used to that. Has anyone experienced this and how do you overcome it? I want her to get used to the shoe but it seems like she only stands and attempts to walk without the shoe. Any thoughts or ideas?

Sarah's Story

I'm a 26 year old woman from Oklahoma City with unilateral class A PFFD in my right leg. I had a Symes amputation and bone fusion when I was 14 months old. I am now working on my Ph.D in philosophy at Southern Illinois University in Carbondale and wearing an above-the-knee prosthetic with a very basic knee joint and foot and a fairly involved cosmetic cover. I am very physically active--my preferred activities being cycling, swimming, weight lifting, and hiking. With the exception of hiking, I do most of my activities without my prosthesis and so my main concerns with it are limited to comfortable walking, adeqaute cosmesis, and as natural a gait as possible. I would love to experiment with an athletic leg but unfortunately do not have the kind of insurance plan that would allow me to obtain one and probably won't for some time! But, I'm satisfied with things as they are now. I grew up in a fairly middle class family; my parents got divorced when I was a year old and my mom raised me for the most part. I was always lucky enough to have access to good prosthetists and to always have a prosthesis that fit. Everyone in my family has always been supportive, but my mom did choose to handle the course of my treatment and the inevitable personal difficulties that arose for both us during my childhood on her own. She did an amazing job; I was never discouraged from pursuing any activity that interested me, and while I was sometimes discouraged by the limitations resulting from my disability, I was always encouraged to push my physical capabilities to their limit. I played softball and basketball as a child but the only sport I ever became serious about was gymanstics, in which I was competitive for years. Any parent of a child with pffd should take note: it really is best not to set limits on your child's physical activity--even if you think that your child is interested in a potentially dangerous activity-- such as gymnastics, tree climbing, pole shimmying, etc! Let your pffd child test his/her limits. At the same time, do not simply pretend that he/she does not have a disability. Honestly address the fact that there are some things that are difficult and/or impossible with pffd, and that while pffd is far from being the end of the world, it is still a serious and difficult disability to deal with... While I was never teased in school for having one leg, my adolescent years were certainly difficult. I could not help but be self-conscious to the point of pain about my condition and was at times deeply depressed. However, I still tried the things that I wanted to do and was generally very much rewarded for my efforts. I attended a magnet school for gifted and talented children and was very competitive in my academic work. Also, while I was generally very worried that boys and men would not want to date me because of my leg, I always had a boyfriend in high school. And I always went to the prom! I was also lucky enough to have good friends--some of whom I am still close to. These patterns continued as I began attending college, and now, in graduate school I am pursuing a course of study that is deeply meaningful to me and that I love. I am engaged to a wonderful young man who is also in my program here, though we have no immediate plans for a wedding. I do not know whether or not we will have children, but I have become curious about the experiences of other pffd women who have gone through pregnancy and childbirth, and what their experiences have been as mothers. And of course, I am intersted in the experiences of all people who have pffd. Feel free to contact me with questions, stories, etc. I don't currently have any friends with pffd and I'm finally eager to meet some!

super hip/knee/ankle surgery

Olivia had her super hip/knee/ankle surgery in early August. Dr. Paley performed her surgery. Olivia was 26 months old at the time of surgery. She was in the operating room for about 11 hours. Since she was under anesthesia for so long, they put her in the Pediatric ICU for the first night of post surgery. Dr. Paley said that her surgery went well. He was able to do everything he needed and wanted to do in order to prepare her for lengthening.

born with pffd 54 years ago

I was born with pffd in 1952.When I was a child doctors said that what I was born with was very rare and at that time there wasn't a name for it.When i'd be on my left knee the right foot would be flat on the floor.I had my foot amutated and they tried to strighten my femur that was bent and short but it didn't work. My knee on the pffd side as alwas been bent but when I was a child I could move it some but as I got older the knee fused its self together and my deformed hip has fused its self together.I don't know if this has anything to do with having pffd but so that you all will be on the look out I was also born with out my uterus and vagina (some thing else that's rare).I've lead a pretty normal life.Some one had asked on the site if any one with pffd was short I'm 4'11.

Prosthetic

My daughter, Sami, has been using the Moseley style prosthetic. We've been very happy with it, but I am wondering if anyone else has used this design and if you had any problems with it. Functionally it works great...but, some cosmetic issues have been a problem...like finding pants~ we live in Ohio and it gets pretty cold. I'd love to hear from others experience. Thanks! I attached a picture of what the prosthetic looks like.

Libbi

Hi, 23 yr old pff female

hi, i am a 23 yr old pff. im not sure what class i am but i do know that when i was a baby an operation was performed to remove my foot, and i was left with a stump. i grew up very very normal, so for any parents out there who might fear for their children, dont. my mother treated me like a regular kid, and as long as you do the same, your child will grow up as normal as the other kids. i never had an issue regarding my leg, or rather the lack of my leg. i was very active growing up and till this day, i do not really consider myself any different than lets say you. i am in the process of getting a new prosthesis though, which is how i came across this website.i was reading a few of the comments and figuered, let me sign up, hey maybe i could offer some advice, be a shoulder for someone to lean on,since ive been "around the block".

two month old baby boy

I gave birth to a 7.5 lb. baby boy on 8-22-06. We had made it to each of our prenatal appointments and we did not suspect any thing was wrong. I had five ultrasounds to determine the location of the placenta, determine due date etc. Our doctors never found the abnormality. When our baby arrived we were shocked that there was something wrong. Our doctor had no idea what the condition could be and thats what he told us. So Josh and I sat for the next five hours with our first child, confused and scared. At 11:00 that night our doctor called us on the phone in our hospital room to report his findings via the internet.

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