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

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.

PFFD: 

PFFD

I am the mother of a 28 year girl who was born with PFFD. At the time of her birth ultrasound was not being used that frequently and I had no problems so none were taken. It was a total shock when she was born with a very short leg. The orthopedic doctor came in and told me that she would probably have to have her leg amputated and she would probably not walk. Of course we were devastated but after consulting with a pediatric ortho we were told this was not so and she would lead a pretty normal life. She was just a beautiful litlle girl and we took her home and loved her.

21 week ultrasound shows pffd

Hi there I am from Edmonton, AB. i am 21 weeks pregnant and just found out our daughter has pffd, I am devastated. The doctor gave us the option of terminating the pregnancy in the next week, but I cannot do that. Her right femur is about half the size of her other one right now in the scans. Her lower leg bones are fine and has 2 feet. I am really sad and scared, will my daughter have a "normal" life with a prosthetic leg? We met with a great lady who works with pffd kids in Edmonton and she gave us some great options.

Help..bilateral above knee amputation outcomes?

My five year old son, Cai, had bacterial menegitis as a baby and it caused a lot of tissue damage in his legs. We had multiple skin grafts and a muscle removed from his lower leg when he was recovered from his illness at Shriners Hospital in Cincinnatti. Since then he has been seen regularly at Shriner's in Lexington to monitor the development of his legs. X-rays from early on showed that his bone growth plates in both legs were severly affected by the menegitis and the head of his femur bones have failed to form correctly.

PFFD chat online THURSDAY May 26

Just a quick reminder that the Rubin Institute doctors will be doing an online chat on congenital limb differences this Thursday.

This is a great way to get more information and opinions, as well as to meet other families for support.

Please contact icll (at) lifebridgehealth.org for additional information. (Note this chat requires a password, so you will need to contact us ahead of time).

Options

I would like to find out thoughts from other people, whether it be parents and or actual older children or adults living with PFFD on what treatment is the best or why you think it is the best. We were given 3 options and I am noticing from researching allot of people did nothing except get a prosthetic leg over there own leg and foot, I wonder why we weren't given this option, or is it just a given to do nothing?

Ella's Journey

My name is Christa Clawson and I live in Saint John, NB Canada. My husband John and I had a beautiful baby girl 6 weeks ago who's name is Ella Kathleen and she was born with PFFD in one leg also in that same leg, she has NO fibula either, but has a great working foot.

Orphan with PFFD

Hi
My husband and I run an orphanage in southern Mexico. A few months ago we were asked to receive a three month old baby girl who had been abandoned close to the border of Guatemala. We were told she had a handicap and one of her legs was shorter than the other. She has been with us for seven months now and it is clear that she has PFFD.

C-leg charger

My husband has severe unilateral PFFD. No femur or hip joint to speak of and wears an older c-leg prosthesis. Does anyone have a spare charger for one of the older c-legs for sale?

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