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Personal Stories

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.

Brandi 9yrs

Hello Everyone I would just like to say 1st how excited I am to have come across this website with all this information. I have been on line for about 2 hours reading these stories that I had no idea were even out there! I am completely Amazed. My daughter Brandi is 9 yrs old and was diagnosed with PFFD when she was six months old. I was playing with Brandi on the floor and was looking at legs and discovered that one of her legs were longer then the other..

Ethan's surgery scheduled

My son is 20 months old and will be going to get a Super Hip 2 surgery done when he turns 2 years old. Not only does he have PFFD, his femur is growing at a 90 degree angle. So they will need to break his leg to straighten it out and then do the Super Hip 2. Dr. Paley did answer all our questions, so we are sure that he's the doctor to see about our son's condition. I guess we are just nervous about his surgery because he's our only child.

Julian is almost four...

and is a busy boy. Nothing seems to deter him until his mommy tells him no.

Home after Super Hip done Dec. 9, 2009

We are home now after our first procedure with Dr. Paley. We went to West Palm Beach Dec. 6 and returned Christmas Eve. Our daughter, now 16 is doing GREAT after this procedure. She required an extra week of rehab stay and we had many frustrations with the communication between Dr. Paley's office and the hospital, but as far as surgery outcomes we are pleased.
If you have an older child that is beginning their journey to correct PFFD/CFD and have specific questions you can email me as well as if you have not been to the new facility at St. Mary's Children's Hospital:

broken pins common?

My son Robert has recently went through 2nd lengthening process , we are in bone consolidation phase at present. Last week we went for xray on femur to get date for removal of frame only to discover that one of the pins had snapped . This isnt the first time this has happened , a pin broke on removal of last frame. Just wondering if other people experiencing this ? Is it normal?

Martin's Story

I am 54 and found out 2 weeks ago that what I have had all my life is actually called PFFD. I was hospitalised at 15months old for 7 years at Chailey Heritage in Sussex. I had a bone graft at 3years old ( which I understood later had not worked). I was allowed to get a contraption strapped to me that let me walk at the age of 7 or so.

Offensive material posted by another person- don't click on them

I hope the offensive posts are removed....knowing it is likely spam and perhaps has a virus, I hope no one clicks on it.....Not sure how to requesst removal...if anyone knows, please request moderator to delete it asap. Thanks.

Setting up our will

I'm hoping someone could help with this information. I'm trying to set up our joint will and was told to add a special section on Olivia's condition, her likes, dislikes, doctors details, etc.

Not quite sure exactly what is expected. Please let me know if you have a format i could use. I'd really appreciate it.

Many thanks


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