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

Looking for people with pffd

Hello, My name is Kelly and I was born with bilateral pffd in 1978, my parents were told that I would never walk and be confined to a wheelchair.

I walked when was 3 yrs old much to the drs amazement! I havn't had any surgery as my pffd is severe and it has slowly deteriated with age.. I'm now 33 yrs old, still mobile and have a gorgeous 4 yr old son!!! My pregnancy was a perfect and it caused no problems with my disability.

33 yr old with pffd

Hello, I'm a 33 yr old woman that had bilateral pffd. I would like to hear from others with my condition as I know it's extremely rare.
I havent had any surgery and I had a healthy baby boy in 2007

I work as a nursery nurse and don't let my condition affect me, although am currently on the waiting list for an arthroscopy as having pain in my left knee... I'm very uncertain of what the future will bring and would love to hear from people in a similar situation Xx

A couple of old x-rays and curious about classification.

Hi,
I thought i'd finally get round to posting a couple of my X-rays from 1983-84. The first one is before any surgery, and the second after a wedge osteotomy to correct my gross coxa vara.

I've always been curious to know which Aitkens classification, and now Paley classication I would be given??
Over here in the UK my orthopaedic consultant went with Gillespie & Torode for classification, Group I, with marked femoral shortening.

PFFD chat June 28

In case anyone is still checking in here, just a reminder that there is an online chat this week on chatzy.com on the topic of congenital limb differences, which includes Congenital Femoral Deficiency (sometimes known as PFFD). Great opportunity to ask very experienced limb differences surgeons questions about lengthening, deformity correction etc. Also a good way to meet other families and chat with them.

Please contact icll@lifebridgehealth.org for log in information.

Need to help to find a Prosthetist in southern California

Hi everyone,

My name is Lida and I am 25 years old with PFFD type C. I never had any surgery done and I am having a very difficult time finding an experience Prosthetist in Los Angles. Could anyone please give me a list of Prosthetist who have experience with making prosthesis for PFFD patients.

Best,

Lida

Mallori's Place

Description
(PFFD) Proximal femoral focal deficiency is a rare, non-hereditary birth defect that affects pelvis, particularly the hip bone, and the proximal femur. The disorder may affect one side or both with the hip being deformed and the leg shortened.

Mallori was less than 24 hours old, her Mother, holding her close to her heart, soft tears falling down her cheeks. Will she ever Dance?

New to this site looking for people to talk to.

I'm new to this site and i just happen to be doing a little research on my PFFD. Trying to learn what is and just curious if there were other people out there like me. I'm 33 years old, I have Bilateral PFFD and really don't know to much about it. I also like alot of other people went to Shriners hospital. I started going there i believe around the age of 3. I am 4'10 my left leg is shorter than the other and of course i walk with a limp. i have a twin brother who does not have anything wrong with him.

dealing with pffd.

Hi my name is shannon. I am 21 years old and I have pffd. we I was 7 I had my first lengthing surgery and of course it was scary. there was a problem with my bone harding to fast so that surgery didnt work very well. the doctors than had decided to amputate and the day before my surgery my doctor came in and had said I am so sorry I cant take this girls leg. He said I have another idea and he procedded to say that no matter what my knees would never be in the same place whih is true if he amputted my leg. He than said how about we lengthing the tibia since it didnt work on the femur.

A Dolphin Tale

Dealing with Insurance company denials for orthotics

I am an HR professional searching for solutions for one of my employees whose dependent child has PFFD. The health insurance carrier has denied the shoe lifts for the patient. We are going to start the appeals process since the insurance company policy wording states that, for reasons that are totally beyond me, only patients with a diagnosis of diabetes qualify for shoe lifts, even those who have PFFD. Go figure.

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