Personal Stories

ON the 23rd of January I turned 93. Hard to believe with all I've been through, but here I am-still alert. still able to play chess, still drive, and with my power chairs I have a radius of 3 miles for activity or shopping. I have been diagnosed with stage one Lung cancer and am having breathing problems, so I am not sure how much longer I will be around-that is up to Lord.

I just celebrated my 91st birthday (yesterday 1/23/22). Thought I would let you know, I am still active, still driving despite being wheelchair bound the last 10 years and can still play chess and beat the youngsters. God bless you all.

I celebrated my 90th birthday yesterday. Thought I would share this with other PFFDs. I am still quite active, live alone, able to drive and can still play a strong game of chess. The best advise I can give is always remember it's the ability NOT the disability that counts. Keep a close relationship with the Lord as He is always there to help and protect you.

I am Ella, I live in Brighton in the UK, and I am a documentary film director who has bilateral PFFD. I am making a film about my experience and would love to connect with other Adults who have the same classification as myself, which is Paley Type 3B Bilaterally, and Aitken Classification D. It would be fantastic to meet people who have and haven’t had surgery. I see that there are 2 women who have written on this site; Kelly Laura who is also in the UK, and also Steph, who both sound similar to myself.

I am writing this to share the life of a disabled person, specifically a PFFD, prior to WWII who grew up in the 30s. Life was different and medicine, knowledge and sophisticated equipment were not available as in today’s world. A month after I was born, which would be about February or March of 1931, I was whisked away to a hospital to ascertain the problem related to my right leg - hip. X-rays revealed no head to the femur and no hip socket. There were no known cases to compare. I was told later there was one other a female who died before her 12th birthday.

I created a page about Prosthoses here http://www.pffd.org/prosthosis.htm. Hope you find it useful.

Hi everyone
I was born 46 years ago with PFFD, unilateral, left side. At birth specialists told my parents I would never be able to walk. They were wrong, didn't know better. I don't know what degree PFFD I have (I think between A and B), as I have never known the name of my condition till I was 35. Through my work as a social worker, I met a client who had a similar condition as I have and who revealed the name PFFD to me. I walk with a prothese that lengthens my leg. I live happily now, though a fysical handicap is not the only element that affects our happiness.

7/29/13
My son Erik has had about 8 surgeries between the ages of 2 and 15. Currently he's done with his 4th lengthening and is anticipating a final internal lengthening device in his femur before he finishes High School. He's had the Super Hip, 3 femur lengthenings (one internal) and one tibia lengthening plus a few other adjustments. He has a left foot two sizes smaller than his right and currently is wearing a lift about 1.5 inches.