I am happy to find this forum. I am a 43 yr old female with unilateral PFFD. Would love to talk with others about skin breakdown, arthritis etc. Would also be happy to answer any questions for younger folks/parents etc. Just happy to find you all!
draymond
daughter
Hello. Im a 21 year old father of a beautiful 1 year old baby daughter with unilateral pffd. Her left femor is appx. 10% shorter then the right. Im just wondering how it affected some other people. she has no problem walking and it seems like its not holding her back. she walked around 10 months so she is a very smart child. so far, the doctors are telling us that they really dont start any kind of fix until around age 5-6. let me know any info u have. thank you
daughter
Your daughter's pffd sounds much less significant than my personal situation. My pffd left me w/o much of a femur at all so I had my foot amputated and have a full length prosthesis. My surgeries were done at Shriners Hosp in Philly, PA and all were with excellent outcomes. I assume by now you know about the Shriners?
To mkwdaddy
Hey. I am a patient of dr paley's actually about 2 years older than you. I have unilateral pffd and have been with Paley since I was 8 months old. When I was done growing the length difference would have been 22 inches. We have done 7 lengthenings, the last of which was in Dec, and I am now about 3 inches from the ground!! I would suggest 2 things for your daughter: 1. Get her to Paley. I have total faith in him as a surgeon and in knowing whats best. 2. Whatever yall decide, they can start lengthenings as early as 2 years old now and I suggest the younger the better. There will be some that you have to wait until she is done growing, I think, but having been through surgeries since I was 4 I can tell you that the younger you are the easier to surgery and recovery will be!!! rebeccah11287@yahoo.com is my direct email address and I would gladly talk with you on there if you have ANY questions, concerns, or just someone to talk through things with!
hip pain
have you had any surgeries ? specifically any kind of hip reconstruction? i'm assuming if you don't have any correction when you have pffd, that you have hip and back pain your whole life. just trying to get some feedback as we make decisions for our 21 month old. you can email me at jenniferbethscott@hotmail.com. thank you for your willingness to share with us.