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Personal Stories

Jennifer's Story

Jennifer's Story  

  • Location:       Ohio
  • Born:             1993
  • Diagnosis:      Unilateral PFFD, left leg
  • Treatment:      Foot amputation, knee fusion, prosthesis
  • Told by:         Dad with notes from Mom
  • Date written:  1/22/97 - 5/15/97


In the beginning.....

Ella

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.

My Life as a PFFD

Biography

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.

About our Prosthosis

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

46-year old woman with PFFD, Belgium, Europe

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.

Looking for advice or a friend to share?

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.

Wheel chair

My daughter has a prosthesis, but sometimes chooses to use her wheelchair. Is using a wheelchair common for people with PFFD? My daughter is 8 yrs. old. Thank you!

Adult with PFFD needing advice!

I'm 26 and have PFFD of my right leg. I am going to attempt to make a long story short -- I went to Shriners until I was about 21 where I had all of my surgeries. I had a handful of hip surgeries to build me a ball and socket. I broke some plates, and pins, and screws, but it was eventually successful-ish. Also, I had four lengthenings (three times on my femur, once on the tibia). I don't remember how many centimeters in length I got, but I do remember the doctor telling me "all together that equals about 13 inches".

Looking for people with pffd

Hello, My name is Kelly and I was born with bilateral pffd in 1978, my parents were told that I would never walk and be confined to a wheelchair.

I walked when was 3 yrs old much to the drs amazement! I havn't had any surgery as my pffd is severe and it has slowly deteriated with age.. I'm now 33 yrs old, still mobile and have a gorgeous 4 yr old son!!! My pregnancy was a perfect and it caused no problems with my disability.

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