Hi there I am from Edmonton, AB. i am 21 weeks pregnant and just found out our daughter has pffd, I am devastated. The doctor gave us the option of terminating the pregnancy in the next week, but I cannot do that. Her right femur is about half the size of her other one right now in the scans. Her lower leg bones are fine and has 2 feet. I am really sad and scared, will my daughter have a "normal" life with a prosthetic leg? We met with a great lady who works with pffd kids in Edmonton and she gave us some great options.
My five year old son, Cai, had bacterial menegitis as a baby and it caused a lot of tissue damage in his legs. We had multiple skin grafts and a muscle removed from his lower leg when he was recovered from his illness at Shriners Hospital in Cincinnatti. Since then he has been seen regularly at Shriner's in Lexington to monitor the development of his legs. X-rays from early on showed that his bone growth plates in both legs were severly affected by the menegitis and the head of his femur bones have failed to form correctly.
Just a quick reminder that the Rubin Institute doctors will be doing an online chat on congenital limb differences this Thursday.
This is a great way to get more information and opinions, as well as to meet other families for support.
Please contact icll (at) lifebridgehealth.org for additional information. (Note this chat requires a password, so you will need to contact us ahead of time).
I would like to find out thoughts from other people, whether it be parents and or actual older children or adults living with PFFD on what treatment is the best or why you think it is the best. We were given 3 options and I am noticing from researching allot of people did nothing except get a prosthetic leg over there own leg and foot, I wonder why we weren't given this option, or is it just a given to do nothing?
My name is Christa Clawson and I live in Saint John, NB Canada. My husband John and I had a beautiful baby girl 6 weeks ago who's name is Ella Kathleen and she was born with PFFD in one leg also in that same leg, she has NO fibula either, but has a great working foot.
My husband and I run an orphanage in southern Mexico. A few months ago we were asked to receive a three month old baby girl who had been abandoned close to the border of Guatemala. We were told she had a handicap and one of her legs was shorter than the other. She has been with us for seven months now and it is clear that she has PFFD.
My husband has severe unilateral PFFD. No femur or hip joint to speak of and wears an older c-leg prosthesis. Does anyone have a spare charger for one of the older c-legs for sale?
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.
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.
Just wondering if anyone can offer advice. My almost 8 month old son Isaac has about an inch and a half length difference and we are planning on getting him shoe lifts soon as he will start to walk. Has anyone had to use these on thier babies? And should we also encourage him to try and learn to walk without the lifts as well or should we mostly use the shoe lifts? Any advice is appreciated.