Personal Stories

hi my sons 10 months kenzie and has pffd he also has a lot wrong wit his hip n docs say they will have 2 take his hip away n replace it with his knee or they will fuse it til his thigh which will mean he wont b able 2 move his leg from side to side,,, they have also said lenghening wont work and have gave us the option of amputating or a rotationplasy(foot turned backwards) its so confusing,, rotationplasty semms like a good option but im worried what kenzies reaction will be when hes older , will he blame me? i

When I was 25 wks pregnant, me and me husband found out that our daughter would have a shorter and bowed right femur bone. It was the biggest hit in the face of my hole life....especially her being our firts kid. Since her birth we have been through a lots of appointements for her condition, and they are planning on a first lenghtenning surgery around 4 years old. It seems so far,... Today she is 11 months....she never crawled but she bum shuffle. She has an orthodic that she wears when she stands.

I am the mother of a 28 year girl who was born with PFFD. At the time of her birth ultrasound was not being used that frequently and I had no problems so none were taken. It was a total shock when she was born with a very short leg. The orthopedic doctor came in and told me that she would probably have to have her leg amputated and she would probably not walk. Of course we were devastated but after consulting with a pediatric ortho we were told this was not so and she would lead a pretty normal life. She was just a beautiful litlle girl and we took her home and loved her.

I wanted to recommend the movie "How to Train Your Dragon". Most PFFD patients at some point in their lives will need a prosthetic device. This movie shows how those wearing a prosthesis can be strong and valuable to society. It's rated PG for sequences of intense action and some scary images, and brief mild language. I really LOVE this movie.

Beth

I'm 23 years old with PFFD of my left leg and right now I am experiencing some major issues with my prosthesis. I have had no surgeries, my mother thought it should be my decision and I don't want an amputation. I have been wearing a full length prosthesis, which doesn't bend as my " little leg" sits inside it. I've been getting on well my whole life with the legs, people don't even realise that I have an artificial leg ,they think I just have something wrong with my hip. I can get up and down stairs the normal way.

My name's Hannah, I'm 20 years old, live in south England and have lived with PFFD all my life. I have a shortened right leg and use a full length prosthesis. I've never really thought about contacting other people with a similar disability to mine but I feel now is the time to maybe talk to people who know what it's like and am interested in your experiences in life.

My first surgery to correct my hip & knee was in Feb 2010. (Sorry it's taken so long to update!) The surgery lasted nearly 15 hours. I was in the hospital for 9 days & I had so many plugs and drains in me that I lost count. I was in ICU the first 3 days. My incision starts at the top of my hip and goes down the side of my leg wrapping around my knee. I had to be lifted from my bed to a stretcher twice a day to lay in an oxygen chamber. The first 3 tries didn't work because the pressure in my ears caused too much pain.

We found out around 2 months old that one of my twin sons has pffd in his left leg. I have been doing a lot of research on this subject as we left the orthepaedic surgeon in our area with a lot of unanswered questions. We had a lot of questions answered through Dr Paleys website and we plan on seeing him in the future. We are planning on lengthening surgery when he is around 5 years old. We are trying to stay positive about his pffd but of course its a rare surgery and we are still concerned about him having to get the surgery as well.

Hello all,

Hi! My name is Caroline. My husband Chris and I live in Iowa. Our son, Nash, is 5 months old and is an amazing little guy. We are so in love with him!! Nash has CFD of his right leg and we were first informed of his leg at our 20 week ultrasound. It was a scary and confusing diagnosis. Mostly because NO ONE knew anything about CFD or PFFD. We immediately went online and found some information. Dr Paley's website was very informative, which was so nice since this condition is so rare and there's not much out there.