Personal Stories

Experiencing serious problems...

I'm 23 years old with PFFD of my left leg and right now I am experiencing some major issues with my prosthesis. I have had no surgeries, my mother thought it should be my decision and I don't want an amputation. I have been wearing a full length prosthesis, which doesn't bend as my " little leg" sits inside it. I've been getting on well my whole life with the legs, people don't even realise that I have an artificial leg ,they think I just have something wrong with my hip. I can get up and down stairs the normal way.

Living with PFFD

My name's Hannah, I'm 20 years old, live in south England and have lived with PFFD all my life. I have a shortened right leg and use a full length prosthesis. I've never really thought about contacting other people with a similar disability to mine but I feel now is the time to maybe talk to people who know what it's like and am interested in your experiences in life.

Hip & Knee surgery-My experience.

My first surgery to correct my hip & knee was in Feb 2010. (Sorry it's taken so long to update!) The surgery lasted nearly 15 hours. I was in the hospital for 9 days & I had so many plugs and drains in me that I lost count. I was in ICU the first 3 days. My incision starts at the top of my hip and goes down the side of my leg wrapping around my knee. I had to be lifted from my bed to a stretcher twice a day to lay in an oxygen chamber. The first 3 tries didn't work because the pressure in my ears caused too much pain. I had to have an additional surgery just to have tubes put in my ears.

My 7 month old son has pffd

We found out around 2 months old that one of my twin sons has pffd in his left leg. I have been doing a lot of research on this subject as we left the orthepaedic surgeon in our area with a lot of unanswered questions. We had a lot of questions answered through Dr Paleys website and we plan on seeing him in the future. We are planning on lengthening surgery when he is around 5 years old. We are trying to stay positive about his pffd but of course its a rare surgery and we are still concerned about him having to get the surgery as well.

New to the site

Hello all,

Nash's Story

Hi! My name is Caroline. My husband Chris and I live in Iowa. Our son, Nash, is 5 months old and is an amazing little guy. We are so in love with him!! Nash has CFD of his right leg and we were first informed of his leg at our 20 week ultrasound. It was a scary and confusing diagnosis. Mostly because NO ONE knew anything about CFD or PFFD. We immediately went online and found some information. Dr Paley's website was very informative, which was so nice since this condition is so rare and there's not much out there.

confused

Hello,

I'm the mom of a 16 month old little boy who was born with PFFD in both legs. The doc here in Ohio told me to just wait and see what happens, while Dr. Paley in West Palm Beach, FL told me he could straighten out his hips and ankles, but told me he couldn't lengthen his legs. I'm afraid to go through with surgery...anyone worked with Dr. Paley? If so what was the outcome?

Thanks,

Amy

MY JOURNEY WITH PFFD

My name is mwazhi my parents found out that i was diagnosed with PFFD at the age of one year ,eight months.They did not know much about it in fact they were told i a had a short hip disease.
My growing up was stressful and challenging i faced rejection from people around me including some of my close relations.My mother was my source of encouragement she motivated me to go out there and be me.She taught me the importance of self acceptance an self confidence,with that the people around me accepted me as i am.

my PRInce

PFFD And Not Loving It

Hi everyone. I am new to this site and so glad I found it. Though I have known about other cases of PFFD through Doctors and Columbia, it is different when you finally get to connect with those that have the same experiences. I am 35 years old with Bilateral PFFD. I have full functioning of both legs. I wear prosthesis for height adjustment and walk with a crutch for support. At birth my mother was told I would not walk, but I beat that battle at age 2.

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