In case anyone is still checking in here, just a reminder that there is an online chat this week on chatzy.com on the topic of congenital limb differences, which includes Congenital Femoral Deficiency (sometimes known as PFFD). Great opportunity to ask very experienced limb differences surgeons questions about lengthening, deformity correction etc. Also a good way to meet other families and chat with them.
Please contact firstname.lastname@example.org for log in information.
My name is Lida and I am 25 years old with PFFD type C. I never had any surgery done and I am having a very difficult time finding an experience Prosthetist in Los Angles. Could anyone please give me a list of Prosthetist who have experience with making prosthesis for PFFD patients.
(PFFD) Proximal femoral focal deficiency is a rare, non-hereditary birth defect that affects pelvis, particularly the hip bone, and the proximal femur. The disorder may affect one side or both with the hip being deformed and the leg shortened.
Mallori was less than 24 hours old, her Mother, holding her close to her heart, soft tears falling down her cheeks. Will she ever Dance?
I'm new to this site and i just happen to be doing a little research on my PFFD. Trying to learn what is and just curious if there were other people out there like me. I'm 33 years old, I have Bilateral PFFD and really don't know to much about it. I also like alot of other people went to Shriners hospital. I started going there i believe around the age of 3. I am 4'10 my left leg is shorter than the other and of course i walk with a limp. i have a twin brother who does not have anything wrong with him.
Hi my name is shannon. I am 21 years old and I have pffd. we I was 7 I had my first lengthing surgery and of course it was scary. there was a problem with my bone harding to fast so that surgery didnt work very well. the doctors than had decided to amputate and the day before my surgery my doctor came in and had said I am so sorry I cant take this girls leg. He said I have another idea and he procedded to say that no matter what my knees would never be in the same place whih is true if he amputted my leg. He than said how about we lengthing the tibia since it didnt work on the femur.
Neat news story out of Oklahoma.
I am an HR professional searching for solutions for one of my employees whose dependent child has PFFD. The health insurance carrier has denied the shoe lifts for the patient. We are going to start the appeals process since the insurance company policy wording states that, for reasons that are totally beyond me, only patients with a diagnosis of diabetes qualify for shoe lifts, even those who have PFFD. Go figure.
My daughter is 23 and suffers from PFFD. She was a Shriners patient until the age of 20. She received various suregeries to help with her length and up until a few years ago wore a 1/2 inch built up. For the past year she has began to complain of sever pain in her hip joint (which we were informed by Shriners, would eventually need surgery/replacement).. and has become quite debilitating. We live in Alabama and are searching for a doctor specializing in her condition. We have yet to find anyone.
I am currently 6 months pregnant with a boy. His right femur is half the length of his left femur. He only has one bone in his lower leg, and club foot on both feet. My doctor here in Tulsa has never seen anything like this and doesn't know what to say but "let's wait and see". I have two other children (age seven and four), and every time I see them running, jumping, or climbing, I wonder if my youngest will ever do those things. I haven't told anyone about his condition except my husband. I don't think either of my parents will handle it well.
Quick reminder - the monthly chat is Thursday March 15 at 8 PM. This chat is specifically for conditions such as Congenital Femoral Deficiency (aka pffd) and Fibular Hemimelia.
For more info, or for the password, please contact icll (at) lifebridgehealth.org . PLEASE be sure to give a brief description of your child (age, diagnosis and treatment type thing) so that we know you aren't one of the spam emails we have been getting lately.