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

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.
Thanks,
Ivy

PFFD Picnic, July 30, 2011 in Northern Kentucky

PFFD Picnic- Memorial Park

Location: Memorial Park
5409 Madison Pike
Independence, KY 41051

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RSVP at: jcottengim@insightbb.com
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For PFFD-Proximal Femoral Focal Deficiency

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

Zoloft

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.

confused.

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.

PFFD online chat on Thursday June 23

Quick reminder - Dr. Standard is hosting an online chat on Thursday June 23 at 8 PM EDT (US). This is on the subject of congenital limb differences, which includes PFFD/CFD as well as fibular hemimelia and some others.

This is a great opportunity to come chat "in person" with one of the surgeons at the International Center for Limb Lengthening, to get some initial information without having to travel. It's also a good way to meet other families with similar concerns. We have had more than a few pregnant moms do this chat too, for fact gathering.

PFFD and having children

Hi All! It is great to read everyone's experience with PFFD. I am a 27 year old female with unilateral pffd (right leg) and my parents chose lengthening for me along with using shoe lifts for any discrepancy still left. Though doc's have been able to lengthen my leg a total of about 5 inches, I do still have a diff of approx. 4 inches. I have an amazing life w/ amazing family and friends around me who have always encouraged and allowed me to be myself. I define my birth defect, it doesn't define me!

older bilateral PFFD

HI! I'm a female , 3'10" with bilateral congenital absence of femurs, patellas, and illiums. I stopped using prostethics years ago, as I couldn't handle them. I'm getting incontinence from a 'dropped bladder' My urogynocologist isn't sure how to insert a 'sling' with all my missing bones. She inserted needle in my ankle to thread up toward my heart but at my waist, it went in directions she didn't see before and stopped. Does anyone have suggestions on how I can get a 'sling' proceedure. Thanks for any help you can give me.

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