Hi! this is my first time on this web site and i think it gives those of us with PFFD some great insight. I am 23 years old and was have bilateral pffd. I have not actually ever talked to anyone that has pffd. I live in Mississippi so if someone with pffd would share there story and information, i am actually going through the process of having a new prosthesis built and there are so many new things available.
Thanks, Hope
I have checked into this site hundreds of times over the past year and a half. I have read many stories and made contact with many people and was helped along this journey with PFFD. I always imagined how it would feel to announce that my baby was finally able to walk, well, it is true, MY BABY IS WALKING!!
Hi guys,
Emily is trying to walk on her own with her new prosthesis but is still struggling. I was just wondering if there was any families taht lived close to Huntington, WV that has achild with PFFD or that goes to Shriner's in Lexington, KY that we could get in touch with. Hope to hear from someone soon.
I will share the story of Cody walking (Yey!!) after this bit of info I just learned. Maybe some parents who have deciced on the Symes amp. can testify to this. I was told that after a Symes surgery the heel pad is too small of an area to bear weight on for extended amounts of time. Therefore a younger child will lose mobility when not wearing a prosthesis. My son will walk on his affected foot and the knee of his other leg or crawl to get around. So if losing mobility (only when not wearing the prosthesis) is true, it could be a factor in when to have surgery done.
Has anyone had experience with a device to help equalize leg lengths that is not a shoe lift? Do you know if it is possible to get an adjustable one (that can lengthen as the child grows)? I am wondering if there is something out there that is less cumbersome than lets say a 3-4 inch lift on the shoe. If anyone has any information, pictures or resources please let me know, as well as pros and cons. My son has unilateral pffd and the descrepancy is about 3 1/2 inches, he is age 4.
I have been using underarm crutches for years now, and I just made the decision to give forearm crutches a try. I have ordered a pair (in Barney purple no less!), and they should be here in about 4 days.
Do any adults (or kids, I guess) have any advice on making the switch? Are there any tricks that I need to be aware of? I've been told that users expend much less energy with forearm crutches than with underarm crutches and that people have actually experienced fewer falls with them (I've had about 4 falls already this winter).
Emily is doing good. We just came back from Shriner's In Lexington KY. She was fitted a few weeks ago for a new leg and we went down to get it. She had to stay a couple of days to go through therapy because her new prosthesis has a knee and they wanted to help her learn how to control it. She is doing well with it. Sometimes it bends on accident but at least she wants to wear this one as to oppose to the straight one. I will keep everyone updated.
My 15 month old daughter has unilateral PFFD w/fibular hemimelia. She was in a Spica cast for six weeks last summer, and is doing great. She is starting to walk with help and stand on her own. We were wondering is there anyone else out there in the Boston area with PFFD? If so, where/who do you recommend for treatments? It's such a rare condition, that it's hard to find others and support groups sometimes. Thanks for any info and help you can give!
Hi everybody! My book, Imagine...Amazing Me! is available. Some of our very own children are photographed in the book. I would love it if you could share your thoughts on the book if you received a copy.
