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dealing with pffd.

Hi my name is shannon. I am 21 years old and I have pffd. we I was 7 I had my first lengthing surgery and of course it was scary. there was a problem with my bone harding to fast so that surgery didnt work very well. the doctors than had decided to amputate and the day before my surgery my doctor came in and had said I am so sorry I cant take this girls leg. He said I have another idea and he procedded to say that no matter what my knees would never be in the same place whih is true if he amputted my leg. He than said how about we lengthing the tibia since it didnt work on the femur. and thank god that it worked! I stayed in the hospital for 6 months while they turned a screw everyday that streched my skin muscle and my bones apart and I did physical therapy everyday to make sure I didnt loose mobility in that leg and it worked amazing. I later at 16 had another surgery and this time they tried the top. this time it worked. I put 13 cm on my leg that time and was in the hospital for a year and a half on and off it was so worth it though. It might have been alot of pain but it was something that at the end made me happier than ever. everyday I went to school people would point and laugh at my big shoe and so I wanted it to change and so I worked hard everyday! Shriners hospital for childern hanged my life. after I did all my lengthing I fell and I had broke my leg and they had put pins in and it wouldnt heel they had asked me if I would do the surgery to have a bone graph to try and fix it and so I did and it heeled and I still have my leg. I deal with alot of pain in my leg and in my hip and there is no doctors around here that know much about pffd. if anyone knows of a good doctor that knows about pffd in the lakeland florida area please let me know.

Hi Shannon,

Thank you so much for telling us about your experience. As a parent of a pffd patient, I wonder how she feels about all of this. You are an amazing young woman!

As for a doctor, I know that Dr. Dror Paley in West Palm Beach, FL works on adult pffd patients.


You are not far from him - go there! I have been to him for 21 years and have done 20 inches of length. He will be able to help!!!