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

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.

glass implants that grow new bone

I just read this article. Who knows ... maybe one day pffd patients will have the option of getting glass implants. It's exciting to think about!

"Engineers design glass implant that can grow new bone"


Amputation of the foot or Rotionplasty??

I decided to write down a question message because of my dilemma a treatment of PFFD.
We live in United Kingdom and have little boy. Eric was born in August 2011 with PFFD.
English doctors in Sheffield think Syme amputating or Van Nes Rotationplasty would be the way to
do. Which we were told this before so it wasn't a shock.

Looking for advice or a friend to share?

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.

Excessively high CRP levels

Has anyone noticed a correlation between high CRP levels and PFFD. My level has been astronomical, but the doctor has run many tests and found nothing to explain them. She has now decided that perhaps they are related to my birth defect. Since CRP is given off by the liver to offset high levels of inflammation in your body, her theory is that the defect has created an ongoing state of inflammation that my liver is constantly battling. CRP levels are also used to determine heart disease, etc., the results can be misleading and frightening. I haven't found any research conducted on this.

Genium bionic leg

My life is so hectic, sometimes i can't really find time for anything
but i want to take sometime and write about my Genium also know as the X2 in some country's
here's a reference link: http://www.ottobockknees.com/knee-family/genium-bionic-prosthetic-system/

I think the best word to describe my genium is reliable, there's certainly a lot of bells and whistle's
built up inside this prosthetic, but the main feature i find that helps is how slow the knee bends when you
need it, my old knee i had to constantly keep moving and there was good risk of falling at times

Online PFFD chat with Dr. Standard June 20

Dr. Standard, Head of Pediatric Orthopedics at the International Center for Limb Lengthening at the Rubin Institute, is hosting an online chat on June 20 at 8 PM EDT.

For more information, including the password for the chat room, please email icll@lifebridgehealth.org .

An Inspiration

Kayla Wheeler is an inspiration! If you have Libbi Chilia's book "Imagine... Amazing Me!", Kayla is "the ballerina" pictured in the book.



Son, 7 years old, pen pal needed.

My son, Julian is seven years old. He has Bilateral PFFD and Bilateral Fibular Hemimelia. Right now he wears AFO's because he can walk and run just as good as any other kid. Any kind of lengthening or surgeries is in the future at this point. But because he is seven and in school he is becoming more aware of the difference in heights between his classmates and himself.

I was hoping that there is another child in the same age range that would be a pen pal or email pal to my son.

You can respond to this thread or message me for our contact information.

Daughter's First Lengthening

Our daughter was born almost 4 years ago with congenital short femur/unilateral pffd. Although we discovered it while I was pregnant and knew she would eventually have 3-4 lengthenings, our treatment so far has been just to LOVE her and watch her grow and develop into the beautiful little sprite that she is! Her first lengthening is pretty quickly approaching now and my husband and I have not had anyone to talk to (other than the physicians).


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