Personal Stories

Hello. My name is Shalonda. I have a 19 month old daughter with pffd. her left femur is shorter than the right. there is about a 4 inch difference. I'm having a little trouble with decision making. She has not had any surgeries yet. The only thing the doctors are talking about is amputating her foot. I was just hoping that maybe they could do something else, like maybe lengthen it enough to where she could wear a shoe lift?

Hello!
I just wanted to post a picture of the frame that I have on right now. It's called a Taylor Spatial Frame, and it is correcting bone curvature. Yes, it looks painful, but no.. I have not felt much pain at all. I am completely ambulatory (walking) without the use of crutches or anything else. Though I have gotten used to it, it's still a little uncomfortable to sleep with. If anyone has questions, feel free to ask.

Romie is 3 years old now and he had the super hip surgery on his right side on june27th at shriners in Philadelphia. They inserted a metal rod to hold the hip bone in place while it heals. The doctor told me that they would take the hardware piece out when the hip bone is stable. He wore the spica cast all summer til august 25th then they took it off and he went back 2 his usual 2 inch shoe lift. I sent Romie back to school on September 4th, by september 17th he was complaining of pain on the right side, he didnt want to wear his shoe anymore or put any weight on that side at all.

My name is Adam, I am 17 years old and I live in Sweden.
I have no idea which grade of PFFD ive got, im 100% sure that I have it
I have no kneecaps and my thigh bone is EXTREMELY short compared to the 'norm', and was also born with absolutely NO arms at all.
I dont see myself as disabled, i just concider myself as armless and funky legged
I like to quote Spider-Man by saying "this is my blessing, this is my curse", I really think that it is true aswell! My life has been a true struggle. I've tried to commit suicide weekly from the age of 11 'til 16.

Gosh I'm not sure what to write, where to begin. I'm 32 years old. I have neither the socket nor joint of my left hip. I am also missing my right arm and my left one is significantly deformed. I was reading some of the entries and have no idea what they were talking about. I'm sure there are technical terms to what I have just don't know them. Another thing that struck me about this sight is that I had no idea there were so many forms of PFFD. Anyway, I wore a prosthetic leg throughout my childhood. My parents decided to let me decide what surgeries, if any, were best for me.

I just wanted to let parents know that the bean bag chair has been a life saver during surgeries for my family. My little girl gets uncomfortable or "tired" of sitting in a wheelchair or in her bed so her papa bought a bean bag chair for her. Whether she is in a cast or an external fixator, we can position her anyway that she wants to be so she can play with her toys, watch tv, eat, and even sleep. Those are my two cents for the day. Take Care!

Hi ~ I just wanted to give some info on my son Jared that was born with PFFD. He is 16 years old now and doing great. We had a symes amputation when he was 9 months old and his femur fused to his pelvis when he was 6 years old. I don't recommened the fusion but the amputation has worked out great. If anyone has any questions please don't hesitate to ask.

MY LITTLE MAN JAMISON ENTERED THE WORLD IN JULY 2005 7 WEEKS EARLY TO MY SURPRISE. FORTUNATELY WE NEW AHEAD OF TIME THAT JAMISON WAS MISSING HIS LEFT FEMUR BONE. OF COURSE AS ANY EXPECTING PARENTS THAT WAS NOT WHAT WE WANTED TO HEAR BUT IMMEDIATELY CAME TO GRIPS AS GOOD AS WE COULD AND STARTED INVESTIGATING. MY YOUNGER BROTHER WAS A PATIENT OF SHRINERS HOSPITAL FOR PERTHES DISEASE. SO I KNEW RIGHT OFF THE BAT WHERE 2 GO. NOW JAMISON JUST TURNED 2 IN JULY AND CURRENTLY WEARS A PYLON PROSTHETIC AND IS DOING UNBELIEVABLE. HE HAS AMAZED ME MORE THAN ANYTHING AS ALL YOU OTHER PARENTS KNOW.

My daughter Cobi was born with PFFD. I had 2 sons at the time and when she came into the world I was estatic. She was placed beside me wrapped up and I had 20 minutes of absolute delight until the Doctor checked her over and then came the bomb shell.