Personal Stories

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 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 son Kaheim was a normal baby until he started to walk we notice he Limps after Taking him to the doctor we were told he has pffd iam not even sure what type it is because the doc was telling US about an OPeration to correct it and it would have to be repeated about every 3 to 4 years and it's a possibility of AN infection and then amputation is a must his right leg is 3.8 cm shorter than the left he's only 2yrs old please help me I Live in Jamaica

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.

Hi, as I wait for an estimate from Dr Paley's hospital, I would like to get a feel of the cost of super hip operation and lenghthening, and also duration between the super hip operation and lengthening. Are there extra charges/taxes for patients from outside US? Am from Nairobi - Kenya... Please Help

Simon

Hi, I am new to this site. Did not know it even exsisted. When I first researched about my PFFD there were hardly any information about it. But I am here for anyone to ask any questions. I am 20 years old , so feel free to ask anything.

Hi, my name is Natalie and my daughter Raegyn is 4 months old and has PFFD of her right femor. We're just getting started on our journey and she already had one fracture of the femor. I really don't know what to expect and our doctor is kinda of a fast talker and is telling us that theres nothing to do right now, but as a mother I'm sure that most understand that when there's something wrong with your child your natural reaction is to worry. I would like to get in touch with someone to talk about the what-if's, the what next, and the how comes.

Hello, my name is Amanda, and I am a parent of a little boy with PFFD. Dylan is 2 years old and was diagnosed last September (2009). He is scheduled for a hip osteotomy next summer (2011). I am not really sure what that means, other than that he will be in a cast from his chest to his legs for 4-6 weeks after that. I am afraid what that will mean for him, because he is a VERY active little boy. The reason I joined this website was to connect with other parents about what to expect in the coming months and years; from surgeries - to his entire future.

Hi, My daughter Ayanna has unilateral PFFD. She is now 1yr 3 months, I was wondering how early lenghtening procedures can start? The doctors I have met have told me that they will advice me in due course!! I need to know to plan!! Please help

Simon

Hi, am looking for people with pffd or those affected by it by being parents or friends/family of people with pfffd in nairobi, so that we can network and work together. Kindly get in touch with me, my email is skinuthia2001@yahoo.com

regards

simon