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New Research

Information about new developments on traeatments for PFFD. Coral, stem cells, new Prosthetic devices, etc.

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"



Just wanted to put this out there... Research is linking limb reductions to the use of SSRI drugs. Lawsuits are being filed against phizer drug company for the product Zoloft. Scientist have linked this drug to many birth defects including partial or total absence of limbs.

Super Hip 2

Has anyone had the Super Hip 2 surgery with Paley? Dr Paley said my daughter needed the Super Hip 2 wich is a little more detailed than the Super Hip 1. I think he has only done around 10 of these. I would greatly appreciate any info anyone can give me on this.


Interesting New Bone replacement

I thought the article was very interesting

I don't know if the new "bone" implanted would "grow" as a person grows. Also there are often also ligament and other issues with PFFD, but it will be interesting to see what will come out of it in 5 years or so which is when they expect human trials.

iskd nail

has anyone undergone iskd nail lengthening? or has anyone any info on subject

New Lengthening technique...???

Hi, I was just reading and article and it seems as though there is a new procedure for lengthening that is still in the developmental stages that is a plate that goes on the bone and the distraction is done using a small rench through an incision in the skin. Anyone heard of this? Apparently it was talked about at the American Association of Orthopaedic Surgenons this past March. Here is the article:

Electrical Stimulation and Limb Lenghting

Hi, Frank Gratke here, son Kevin, Aitken class D, right leg. Electrical Stimulation(ES) is now being used for spinal cord patients. The electroids are placed directly into the muscles. This allows a stimulation of the muscles in a very controlled envioronment. We have Dr Brain Black here in Milwaukee Wisconsin. We have heard of Dr Randall Betz who does spinal cords and Dr Dror Paley, who carves hips ,out of Maryland called me a few years ago.I am of the believe an Aitken Class D can be surgery corrected if ES is used. If I can get the three doctors talking I believe my son can have 2 legs alm

McKenna's progress during limb lengthening...

Hello Everyone!!

Our little girl McKenna was born on July 7th, 1997, and was diagnosed with PFFD, class "B", right leg only. Just about 2 months before she was born we were in for a checkup and they did an ultra sound to detect her size as her older brother was over 10 lbs at birth. Everything looked fine, but then the nurse doing the exam noticed something and called in a doctor to confirm her findings. That is when we were thrown into the world of PFFD.

We were shown old black and white photos of children with varying classes of PFFD, and most of those photos also showed other birth issues not related to PFFD. We were shocked, scared, and confused about why this happened to our little girl. One doctor at the hospital did hand us a card for a limb lengthening hospital in St. Paul, MN. and said to contact them once our little girl arrived. We did, and once she was around 3 months old we brought her in for an evaluation.

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