I just wanted to say this site is awesome. I'm a 31 woman w/bilateral PFFD and a right above knee prosthesis. I'm married and have 2 daughters. I'm just so glad we have this forum to share stories. I'm really excited to see such a variety in ages and circumstances. Does anyone know of a PFFD conference? How cool would that be????!!!! I just got back from the Amputee Coalition of America conference in Atlanta. There were a lot of people with PFFD there. If there is not a PFFD conference yet, there should be!
My name is Gabrielle and my grandson has PFFD. He will be 11 yrs old this year and is in the fifth grade. At first it was hard to deal with because he was also born with Pierre Robin Synodome. But we have all adjust quite well now. He is very active. He run every year in the Akron Kids Marathon which is 1 mile. The only thing right now is he want to ride a bike and we have yet to figure how he can do this. I read the article in People Magazine about Lily and Maya and how there parent have had to make adjustment for them which we have had to do also.
Well, I've been a member for about a year and I think I'm finally going to have my surgery. I really would like to do lengthening on my legs but I think it well be to hard. See both of my legs are short and my right is shorter by four inches. This summer I really wanted to have the surgery but my mom is making all the decisons. She would like for me to have it after I graduate which is next May. And also right now I don't have any insurance becasue my Medicad was taking away. It delayed my ear repar surgery for my deformed ear.
My name is Lindsay and i was born with PFFD and it has been the hardest thing on me. I finally want to talk about it. I have had 34 surgeries on my Left femur/hip/knee. I was the first kid to try the new internal lengthening rod which was tough. I just want to know what path everyone else is taking..
Hi Everyone! :)
My name is Megan Miner. I am 19 years old and i have PFFD, but my twin sister Katie doesn't. I have no idea what class i am, but i definitely know i have PFFD! lol! My mom has always been very supportive and always treated me and my sister as equals. I was raised just like any other kid. My mom is pretty much my hero. Im a VERY outgoing person who LOVES to have fun with all my friends. Everywhere i go.. people know me, call out my name and give out hugs!
I can walk... but i have a wheelchair only for school, the mall, and long distances.
Hi,
I just read about this article today in Sheila's post, and now just mentioned in Angela's, and was wondering if there was any online method of viewing this as i'm in the UK and i don't think we get that magazine here?
It might be that a kind person may be able to scan it an email me it maybe. Be interesting to see it.
I'm sure such an article brings national coverage of a condition that i'm sure most people still haven't heard of.
I was just reading the People Magazine story on Lilly Stiernagle and Maya Albert and was very struck in the similarity to their syndrome and my daughter's. The geneticits called her syndrome Fomoral Facial Syndrome but it shares so many simiarities. This syndrome also has shortened or absent femurs but can also include cleft palate and other maxofacial deformities. My daughter's femurs are very shortened and bowed and she also had coxa vera of the hips where the head of the femurs enter the hip socket at the wrong angle.
My sister just sent me the article in the July 21 issue of People Magazine regarding Maya Albert and Lilly Stiernagle. I am 56 years old and have lived with PFFD my entire life -- when I was born the doctors told my parents I would not live, then that I would not walk and the best thing that my parents could do was to put me in an institution and forget about me. Obviously they did not! I have been married for 30 years, have a 24 year old son who is 6' 4" tall and I use NO prosthetics at all--other than a wheelchair for "long" jaunts -- like to a Super WalMart or the mall.
my son michael has unilateral pffd and has had lengthening with Dr Paley his leg has been lengthened 20cms but we still have a long way to go michael is almost 10
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.