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

Options

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?

Ella's Journey

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.

Orphan with PFFD

Hi
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.

C-leg charger

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?

"How to Train Your Dragon" movie

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

Experiencing serious problems...

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.

Shoe lifts

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.

PFFD/CFD online chat Thursday 4/28

Quick reminder that there is an online (real time) chat today, Thursday April 28 at 8 PM, EDT. This is a great way to ask the doctors questions.

For more info, please contact icll @ lifebridgehealth.org

Living with PFFD

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.

Hip Replacement Surgery

I'm 29, in Phoenix AZ and have PFFD. I have been looking for a doctor to start my procedures, and I've done a bit of research. I have looked on the internet ( http://en.wikipedia.org/wiki/Hip_replacement ) and found a doctor who looks to be excellent. Dr. Kozinn with Scottsdale Joint Center ( http://www.scottsdalejointcenter.com/Services/Total-Hip-Replacement.aspx) has excellent reviews and new technology.

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