I'm really new to the boards, to be exact 2 hours and a few minutes. My name is Carmen, I'm 38 (okay--39 in October), Registerd Nurse (currently I'm a stay-at-home-mom), married, mother to two healthy beautiful children...and I have PFFD. I was one of the first (so I'm told) experimental Van Nes procedures to be EXTREMELY successful at the University of Kansas in 1969. I've been living a very happy, sucessful lif.e
I don't know if I can be of any help to anyone, but I would be willing to try to help answer any questions/concerns. I've always been open about my PFFD.
Oh, forgot to say, Right lower limb-complete abscence of femur and fibula. I also only have 4 toes!!!
Warmly, Carmen
Welcome Adult with PFFD
Welcome to the site. There are many of "us" adults with PFFD who visit and post on the site. I think you will find lots of happy, productive, active and incredibly ordinary adults with PFFD.
The families with young children are incredible! I love reading their comments and concerns. It has proven to me that my suspicion of PFFD having been harder for my folks than me is true. I may have had the surgeries, but I got to be sedated and medicated while their nerves and stomach churned. Also I navigated a few cruel classmates and teachers, but my parents had to wipe away those tears...very few of which I remember. But my mom remembers! And these moms and dads will remember too.
It can all seem like so much.....even one surgery, one cruel comment and so many medical decisions. These are extraordinary parents. I'm honored that these parents share their issues with each other and "us" adults who have no idea what the "fuss" is about. The biggest blessing being that we were just ordinary kids, like all the others.