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

Meeting others with PFFD

The other day I met someone with a similar PFFD and I just wanted to share with everyone on here how great it was. Although I'm only 20 and the lady I met with is early 60's it was great to be able to share stories of growing up with the condition and how different and similar it was 60 years ago and now. We had a lot of laughs swapping stories and comparing growing up (which wasn't very different at all). I never knew that speaking to someone with the same condition would be so helpful.

PFFD patients who have had amputation

I'm having issues with getting a new prosthesis and I keep getting told the same thing- amputation. I just wanted to know if there are any adults who had their " LITTLE LEG" amputated in order to get a better fitting prosthesis and if it was worth it. I'm worried that I would have less mobility and that I wouldn;t walk very well as the hip would need to be stabilized.

PFFD / CFD online chat August 11

Just a quick not to say that the next regularly scheduled PFFD / CFD / Congenital Limb Differences chat is Thursday August 11 at 8 PM EDT. A great opportunity to chat in real time with several very experienced pediatric limb lengthening surgeons. (We do all sorts of treatments, so no one is going to "push" lengthening, but it's a good way to get some basic information).

Limb Reconstruction in the UK?

I was wondering if there is anyone in the UK has had experience with the Nuffield Orthopaedic Hospital in Oxford? It looks quite good in terms of limb reconstruction and prosthetics for PFFD. I need to be transferred from Scotland down to England for specialist help. I'm wondering if it's the next best thing after Dr Paley, especially for those of us who can't afford the surgery in the USA.

Van Nes rotationplasty

I am new to this site and I do not have PFFD. However, I am going to have to choose my form of amputation due to a serious infection and I am looking into the Van Nes procedure. I know that it is generally used to treat PFFD, so here I am. I'm interested in any kind of information anyone can give me on it. I know what it is and how it works, but I am curious about the long term; complications, success stories, anything at all. I appreciate it.

PFFD Picnic, July 30, 2011 in Northern Kentucky

PFFD Picnic- Memorial Park

Location: Memorial Park
5409 Madison Pike
Independence, KY 41051


RSVP at: jcottengim@insightbb.com

For PFFD-Proximal Femoral Focal Deficiency


More Info PFFD Picnic in NKY
Date Saturday, July 30, 2011
Time 11:00 am – 6:00 pm EDT
5409 Madison Pike
Independence, Ky. 41051


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.

Makani's Journey...so far

I wanted to share since i haven't been here since Makani was little.


hi my sons 10 months kenzie and has pffd he also has a lot wrong wit his hip n docs say they will have 2 take his hip away n replace it with his knee or they will fuse it til his thigh which will mean he wont b able 2 move his leg from side to side,,, they have also said lenghening wont work and have gave us the option of amputating or a rotationplasy(foot turned backwards) its so confusing,, rotationplasty semms like a good option but im worried what kenzies reaction will be when hes older , will he blame me? i

Our 11 month old daughter has PFFD

When I was 25 wks pregnant, me and me husband found out that our daughter would have a shorter and bowed right femur bone. It was the biggest hit in the face of my hole life....especially her being our firts kid. Since her birth we have been through a lots of appointements for her condition, and they are planning on a first lenghtenning surgery around 4 years old. It seems so far,... Today she is 11 months....she never crawled but she bum shuffle. She has an orthodic that she wears when she stands.


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