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

Experiencing PFFD

I was born with P.F.F.D, Aiken Type I, and coxa vera. After careful consideration my parents decided that they were not going to go ahead with an amputation which was suggested when I was a toddler.

I have had various surgeries including the following:

(2 years)- Valgus Osteotomy - right femur

(3 years)- Repeat Valgus Osteotomy - right femur due to loss of fixation

(9 years) - Left Distal Femoral Epiphyseodesis

(12 years) - Sutherland Double Innominate Osteotomy and Ileoposoas Recession

(13 years) - Ilizarov Leg Lengthening

(27 years) – Total Hip Replacement

My femur discrepancy was approximate 18 cm. I have a lift on my shoe, and have had surgeries including lengthening of my short leg and shortening of my long leg.

Checklists for getting a new prosthetic (prosthosis)

For a child's PFFD prosthetic where there is no amputation the fitting is different than what most protheticists are used to working with. Each PFFD case is different. In our case the foot/ankle/tibia/knee are all unaffected. So far (she's almost 3) we've opted for no surgery and to just use a Mosely-type protheses but made of lightweight flexible carbon-fiber.

There are a few key differences we've discovered between the "standard" prosthesis design and a PFFD one including:

the red asterix next to a subject in your sent items of the inbox

Hi, i was just wondering, does a red asterix next to the subject in the sent section of a members inbox mean the sent email hasn't been read by the recipient? It's only i have a couple next to messages i sent to a member months ago, and i think she may not have read them.
Thanks for any help.


Prosthetics TV show

There is a new show about prosthetic devices called Rebuilt: The Human Body Shop that airs Wednesdays on the Discovery Health Channel.

The show features a few people (adults and children) each episode. It tells their story about why they require a prosthetic device and how well they are living with it. The stories are very uplifting. Last week’s episode featured a boy with fibular hemimelia who was born without his foot. He is now an accomplished soccer player with the help of his prosthetic foot.

Kelly Anne Dolan Memorial Fund

I have a bit of good news for those of us living in Pennsylvania, New Jersey, and Delaware. The Kelly Anne Dolan Memorial Fund (KADMF) [[http://www.kadmf.org/]] provides advocacy, education, information and financial assistance for the uninsured needs of families caring for terminally, critically and chronically ill, seriously disabled or severely injured children. The child must be a resident of Pennsylvania, New Jersey or Delaware, though may be receiving treatment in another state. The Fund helps both low income and middle income families.


Hi everyone! I am still writing that book...I have about 13 different children. Some from the "I CAN" web site. I have included children with any limb difficiency. I want this book to be multi-cultural. Please let me know if you are interested or need more info. Contact me privately...and thanks to ALL that have sent pictures of your beautiful children already. I am hoping to have the book done soon! It's "done" I just need a few more children from different cultures.

Thanks so much!!

PS...Sami is walking indepently with her prothesis that is "Mosley-like" It's WONDERFUL!!! Sami is amazing!!!!

Adult Woman with PFFD

I am a 26 year old woman with PFFD. I am one of twins, and my twin brother was born with no abnormalities. I grew up a very normal life, and never let my condition rule my life. I received my first prosthesis when I was 1 years old. I have always been very active and received a new prosthesis about every year. I had my first and only surgery when I was 19 years old and that was a partial amputation. It was to allow my prosthesis to be more comfortable. I am now married and my husband and I are discussing starting a family. I would love to hear from other women with PFFD. I am nervous about possibly having children as I'm unsure if my hip could stand the extra weight. I just found this site today and I'm excited about hearing from others just like me!

Olivia’s prosthesis [pictures]

I have attached some pictures of Olivia and her prosthesis (the same one she got in October 2005). These pictures were taken on Jan. 5, 2006 when Olivia was about 19 months old. The first 2 pictures show her prosthesis. The 3rd picture shows her without her prosthesis. The other pictures show her wearing her prosthesis.

New Here

First of all let me start off by saying hi. My son Landon (2yrs old) has PFFD (class c). He is walking, runing climbing, doing everything any other child does. Right now his left leg is 4 inches shorter than his right(he uses a lift on his shoe), but as time passes that difference will become greater. He is also missing his fibula and the ankle causing him to have a club foot that cannot be corrected by surgrey. Along with this he is also missing his left arm above the elbow and his right arm below the elbow with 2 little fingers. However he does really well with what he has.

I am wrighting to ask for you imput. The doctors are now talking surgrey. Shriners wants to amputate his foot. The reason they gave me was because emotionally it will be better if he was younger when the amputation took place. I not sure if I can see there point. I guess I keep thinkin in my head that maybe five years from now a new procedure will be developed that may better help him. Besides it is my baby's foot (and I love it very much) He also has no hands so I don't see the point in taking a foot off that he uses. Has anyone had experience with amputation?


Dear All,
This is Sonia , when I was born I had a
problem in my one of my legs : Proximal Femoral Focal
Deficiency (about 50 cm) and now I am 34 years old .I use brace and I havent had any pain till now ,but recently I had joint effusion in the knee of normal leg and it had made me sad as it had been taken for 5 months till now and Doctor said me there is a very tiny extra bone on the upper part of my knee and it makes pain ,I am not sure if can I remove this tiny bone through laser - theraphy or not ? so I want to know is there any chance for me to transplant my leg or is there any other way ?



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