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


Dear All,
This is Sonia , when I was born I had a
problem in my one of my legs : Proximal Femoral Focal
Deficiency (about 50 cm) and now I am 34 years old .I use brace and I havent had any pain till now ,but recently I had joint effusion in the knee of normal leg and it had made me sad as it had been taken for 5 months till now and Doctor said me there is a very tiny extra bone on the upper part of my knee and it makes pain ,I am not sure if can I remove this tiny bone through laser - theraphy or not ? so I want to know is there any chance for me to transplant my leg or is there any other way ?


Mother of 12 year old PFFD

My daughter was born without her right thigh bone and only 1 of the 2 lower leg bones. At 8 months, she went through a Boyd amputation of the small deformed foot on her short right leg. She was fitted with her first prosthesis around her 1st birthday and started walking at about 22 months. She is active and has few if any limitations. We are currently going through physical therapy for the first time to smooth out her walk. Her therapist has instructed her to use a cane in order to assist her in learning how to walk correctly.

Osteoarthritis - a quick question for the group.

We were noticing that dysplastic hips seem to be common in PFFD. (e.g. the top part of the femur moves up and away from the femoral head and the acetabulum). This can cause the top part of the femur to carve out a new hip joint higher than where it would be normally. We were wondering if anyone in their mid-twenties (or older) has had osteoarthritis develop who did nothing surgically and/or had something done surgically. We are wondering because there doesn't seem to be any literature regarding this and we are meeting with a surgeon in 2 weeks or so to to discuss options for our nearly 3-year-old.


Some thoughts on children's PFFD prothetics

Our daughter is now 30 months (just over 2.5 years) old and I feel like we've learned a lot about PFFD children's prostheses. I've written about some of it in the Your first meeting with a prostheticist section. But I thought I'd add a bit more.

Website updated - now you can "attach" files with posts

I've added a module that allows members to upload images and documents as attachments to posts. Now when you go to create a post (Create Content, Blog Post) you will see at the bottom of the page a section called "attachments." There is a two meg limit on the size of all files and all images are limited to 640x480 in pixel dimentions. If that's not enough let me know.

I may also (if there is enough interest and I get a few seconds of time) add some more functionality that displays thumbnails of images in the posts as well.

I will be using this to post a document that shows some of th

Olivia’s prosthesis

Olivia finally got her prosthesis on Thursday, October 27th. (She was 16½ months old.) She didn’t like it. It didn’t hurt her … I made sure of that! But she just didn’t like it on her. Before she got her prosthesis, she was a pro at crawling and pulling herself up to standing. Now she would have to relearn those things all over again.

Help for international children with PFFD

My cosin is diagnost with PFFD type D. Right now he is 2 years old. He is from Bulgaria and he can't get help there. If somebody know a hospital that is working with international children please send me an e-mail at: maria.bg@hotmail.com
We already tryied in Shriners, but they have a policy for international children.

Here is the web site where you can find more information about the child (still working on it).

Thank you very much, Maria

Photos with peoples information

I've noticed over the months I've been a member that only myself and now one other person have put a photo with there information.
This website has the facility to do so, I think more members should use this as it would be nice to put a face to the person.
I even suggested to Mike a gallery on the website, but I don't know if that if possible.

What do you think?

Don't be shy, I'm sure your all great looking folk!

Dave Bailey

Looking for others...

Hi! I am 27 and was born with PFFD. When I was young my knee was fused and my foot amputated. Today I wear a full lengh prothesis and get around just fine. Not much gets me down and I do pretty much what I want. I am currently engaged and loving life. I am interested in talking with others that have a true PFFD. Since it is rare, and living in a small town, I have never had the opperuntity to talk with others and compare notes. ALso, if you have any questions i'd be happy to answer them the best I can. I know my mom was scared when I was born as she had no idea what to do next, and there were no support groups at the time. Thank God for Shriner's Hospital, who took us in and fixed my up.

short stature

Is anyone else with PFFD short? I'm 29 & am only 4 ft tall, with my prosthesis.... I hear that my condition (with the short stature) is rare. Just curious.


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