Hi,
My name is Duane and I'm 60 years old, but until today, I never knew what my condition was called.
My daughter e-mailed the article in people magazine and told me I might be interested in it. I don't even know what unilateral or bilateral means. Since both my legs are the same, I guess I'm bilateral. I also don't know what the Aitken classification means.
Hello-
I found this site the other day and am thrilled to have found it! My daughter, Faith, was born with bilateral PFFD type D. She has had two surgeries to correct issues she had with not being able to completely straighten her legs.
She is unable to walk on her own, she uses a walker, and prefers to crawl in our house.
Does anyone live near the Portland area with a child who deals with PFFD? Do you go to the Portland Shriners? We would love to be in contact with other parents and kids who deal with all the stuff we do. We have a nine year old daughter who would love to meet other kids with her same issues( especially girls). Let us know. :)
HI! I recently found out I'm pregnant. This is my first baby! My husband and are so excited! Just have some questions about people experiences. Did anyone have to be on bed rest for any period of time? How did it affect your balance or issues with your shorter leg?
Hi. We live in Fairbanks, and my beautiful 6 month old Emmaly has unilateral PFFD affecting her right femur. We are planning to move to the Olympic Peninsula of Washington this summer (we have family there), and I was wondering if anyone here lives in that area and/or knows of any good doctors, facilities, support groups, anything in the Seattle area.
Thanks!
-Rachael
HEY EVERYONE.... I'M AN ARTIST & MY WEBSITE HAS SOME DRAWINGS HAVING TO DO WITH LIMB DEFICIENCY AND PFFD... THE DRAWINGS ON THE SITE RIGHT NOW ARE KIND OF DARK, BUT I HAVE SOME 'HAPPIER' STUFF THAT I'LL BE POSTING ON THERE SOON. WOULD LOVE FEEDBACK.
I'M TRYING TO GET A SHRINERS HOSPITAL ALUMNI GROUP TOGETHER... ANYONE ELSE INTERESTED??? I WENT THERE FROM INFANCY UNTIL I GRADUATED FROM THAT SYSTEM AND WENT TO A PRIVATE PROSTHETIC FACILITY AFTERWARDS. I ALWAYS FIND THAT PEOPLE WHO WENT TO THE SHRINE AS YOUTHS ARE PASSIONATE ABOUT STAYING INVOLVED. I THOUGHT IT WOULD ALSO BE COOL IF CURRENT SHRINE PATIENTS COULD CONTACT US (JUST AN IDEA) FOR SUPPORT. IF ANYONE ELSE IS INTERESTED IN THIS IDEA, PLEASE LET ME KNOW.
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.
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).
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!
