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.
I created a page about Prosthoses here http://www.pffd.org/prosthosis.htm. Hope you find it useful.
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.
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"
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.
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.
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.
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
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 firstname.lastname@example.org .
Kayla Wheeler is an inspiration! If you have Libbi Chilia's book "Imagine... Amazing Me!", Kayla is "the ballerina" pictured in the book.