My son, Julian is seven years old. He has Bilateral PFFD and Bilateral Fibular Hemimelia. Right now he wears AFO's because he can walk and run just as good as any other kid. Any kind of lengthening or surgeries is in the future at this point. But because he is seven and in school he is becoming more aware of the difference in heights between his classmates and himself.
I was hoping that there is another child in the same age range that would be a pen pal or email pal to my son.
You can respond to this thread or message me for our contact information.
Our daughter was born almost 4 years ago with congenital short femur/unilateral pffd. Although we discovered it while I was pregnant and knew she would eventually have 3-4 lengthenings, our treatment so far has been just to LOVE her and watch her grow and develop into the beautiful little sprite that she is! Her first lengthening is pretty quickly approaching now and my husband and I have not had anyone to talk to (other than the physicians).
Quick reminder, since I'm not sure how many people are still reading here. The surgeons from the International Center for Limb Lengthening are holding an online chat on the subject of congenital limb differences including CFD/PFFD and Fibular Hemimelia.
For info, please contact icll@lifebridgehealth.org to get the location and password for the chat room.
Our unborn boy has been found to have no right femur at all. His left is in the bottom 3rd percentile of length but goes from hip to knee. The bottom half of both legs and feet measure normally and scan normally. The forearm ulnas are in the bottom 3rd and 10th percentile as well but look to developing properly in relation to what they join on to.
I am deeply concerned that along with the physical disabilities that my son will have he may also have a cognitive problem.
I'm not sure how many people are still reading here, but just in case - there is an online chat on Congenital Limb Differences (including CFD/PFFD) on Thursday Sept 13 at 8 PM eastern US time. One or more doctors from the International Center for Limb Lengthening host these about once a month and are available to answer questions. You do not have to be one of their patients to participate. For more info, contact: icll@lifebridgehealth.org
Hello. My daughter is two and she is going to have syme amputation in November she also has mrsa I was just wanting to know some things about the surgery, how long it will take to get her walking on a prosethesis and if her having mrsa will create a bigger risk. I am so worried but I am trying to trust the doctors. She is going to have it at the Shriners children's hospital on Greenville SC.
Hello, I'm a 33 yr old woman that had bilateral pffd. I would like to hear from others with my condition as I know it's extremely rare.
I havent had any surgery and I had a healthy baby boy in 2007
I work as a nursery nurse and don't let my condition affect me, although am currently on the waiting list for an arthroscopy as having pain in my left knee... I'm very uncertain of what the future will bring and would love to hear from people in a similar situation Xx
