Personal Stories

Cost of super hip operation and each lengthening operation

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

Any one have any questions about PFFD?

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.

Raegyn my Rae of Sunshine

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.

Dylan's Journey

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.

How early can lengthening start?

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

people affected by pffd in nairobi - kenya

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

Shane

Hey all its been a while shanes almost 3 and growing like a weed!!!

Medical Insurance

Some of you might be interested in this information when choosing medical insurance. It is stuff that I have gathered from personal experience.

Madi's upcoming Superhip

Hi everyone. My daughter Madi is 16 months old and has pffd in her right leg. She is scheduled to have Superhip surgery with Dr. Paley in October. It has been so great to hear other peoples stories and know that you are not alone. Madi does pretty well so far. She has a 7cm lift and an AFO brace to stabilize her ankle. So far she really doesn't walk much. She has taken a few steps but really doesn't seem interested. We first met Dr. Paley on August and we were so impressed. Every other Doctor we had talked to told us that there was nothing that they could do. Dr.

Surgery Rescheduled

Update: My super-hip and knee surgery with Dr. Paley had to be rescheduled because I came down with bronchitis. My NEW surgery date is going to be Feb-18th. I was in Florida last week because a media crew was interested in hearing my story. I did some filming while I was there...big step for me considering my condition is something I really just now started talking about openly. I don't know when or where the video will end up but it's out there. For those of you that don't know, I was born with PFFD and at 23 yrs old have a length difference of 10 inches.

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