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Hi, seeking advice. My daughter has PFFD. We chose not to amputate her foot, deciding that she could make that choice on her own. She is 13 now, and is considering it...I'm am wondering if anyone has experience with this and can give insight on what to expect in regard to recovery, phantom pain, mobility, etc. thank you!


Hello people,

Insurance Hoops to jump through

Hello, I just found this group yesterday. My daughter was born in 1991 in St. Louis with the most severe level of PFFD, so she has, roughly speaking, an above-the-knee prosthetic. We were very very happy Shriners patients until she aged out of the system. We now live central Illinois and cannot find any prosthetist nearby that can help with a new leg. We found someone at the Rehab Institute in Chicago who is wonderful and very experienced. Unfortunately, our insurance denied our request for a new leg because the doctor is not in our area of service.

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.

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.

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 .

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).

Adoption of a child with BPFFD

Dear friends,


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