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

20 weeks NO femur at all.

Our unborn boy has been found to have no right femur at all. His left is in the bottom 3rd percentile of length but goes from hip to knee. The bottom half of both legs and feet measure normally and scan normally. The forearm ulnas are in the bottom 3rd and 10th percentile as well but look to developing properly in relation to what they join on to.

I am deeply concerned that along with the physical disabilities that my son will have he may also have a cognitive problem.

Media: Arkansas Cheerleader with PFFD

Great story about an Arkansas Razorback cheerleader. Enjoy!

http://sports.yahoo.com/news/ncaaf--the-girl-with-the--zebra-leg--wows-h...

PFFD chat

I'm not sure how many people are still reading here, but just in case - there is an online chat on Congenital Limb Differences (including CFD/PFFD) on Thursday Sept 13 at 8 PM eastern US time. One or more doctors from the International Center for Limb Lengthening host these about once a month and are available to answer questions. You do not have to be one of their patients to participate. For more info, contact: icll@lifebridgehealth.org

Syme amputation

Hello. My daughter is two and she is going to have syme amputation in November she also has mrsa I was just wanting to know some things about the surgery, how long it will take to get her walking on a prosethesis and if her having mrsa will create a bigger risk. I am so worried but I am trying to trust the doctors. She is going to have it at the Shriners children's hospital on Greenville SC.

New server, some updates

Hi,

We've been having a devil of a time trying to fight spammers who sign up and then post links to spammy sites. A lot of it is coming from a few IP blocks in China so I've blocked them from being able to post. I've also added some additional captchas. If it is a problem for you, the real users, - please let me know and I'll look at other solutions.

Also we had to migrate to a new server - the old one was dying. This should give us a faster responses and it also means that the "Find someone" link is now working again.

Adult with PFFD needing advice!

I'm 26 and have PFFD of my right leg. I am going to attempt to make a long story short -- I went to Shriners until I was about 21 where I had all of my surgeries. I had a handful of hip surgeries to build me a ball and socket. I broke some plates, and pins, and screws, but it was eventually successful-ish. Also, I had four lengthenings (three times on my femur, once on the tibia). I don't remember how many centimeters in length I got, but I do remember the doctor telling me "all together that equals about 13 inches".

Does anyone know a prosthetist in Nashville, TN with experience with PFFD?

I am in desperate need of a new prosthesis. I would like to deal with someone who has prior experience with a person who has had pffd.

Thanks,

Debbie Miller

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.

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