Personal Stories

New to this site looking for people to talk to.

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.

Adult with PFFD....Doctor search

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.

Pregnant with son with unilateral pffd, fibular hemimelia, and club foot

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.

Fighting For A Dream!! (For anyone who needs a pick me up)

Hey, My name is Megan Miner....I wrote my story about 3 years ago when I joined and decided it was time to re visit this site and update yall on all the exciting stuff thats happened to me since i left yall for about 2 years. For those who don't know my story, I'll give you the cliff notes version. I am bilateral, class D. When I was a little, the doctors wanted to amputate both of my feet and one doctor Dr. Tosi refused. She said she had a gut feeling that if she moved the mucsles around in my feet that maybe something extrodinary could come out of it.

Daughter born 10/10/11 with Unilateral PFFD

My daughter was born with unilateral PFFD. It wasn't caught on any ultrasounds, so we were quite surprised when she was born. She is such a delightful little girl and perfect for our family. We're excited to find a community of others with PFFD to learn from and share with. I've started a blog to chronical our journey. Please feel free to visit: www.Elsiesleftleg.blogspot.com

We'd love to hear any comments or advice as we are just at the beginning of the journey. Thanks!

Surprise

My son Damian was born July 3rd, 2011. Throughout my entire pregnancy I was examined carefully because I have a cardiac pacemaker which I received about 3 months before his conception. I had a lot of ultrasounds and all the tech's and doctors showed a normal healthy pregnancy. My water broke at 3:30am July 2 and daddy and I took off to the hospital anxious, tired, and scared, excited...every emotion. 23 hours later on July 3rd Damian was born only 2 weeks early and a surprising 5lbs 3 ounces. The doctor asked "why is he so small?" I had gained over 50 lbs so we were all shocked.

confused.

hi my sons 10 months kenzie and has pffd he also has a lot wrong wit his hip n docs say they will have 2 take his hip away n replace it with his knee or they will fuse it til his thigh which will mean he wont b able 2 move his leg from side to side,,, they have also said lenghening wont work and have gave us the option of amputating or a rotationplasy(foot turned backwards) its so confusing,, rotationplasty semms like a good option but im worried what kenzies reaction will be when hes older , will he blame me? i

Our 11 month old daughter has PFFD

When I was 25 wks pregnant, me and me husband found out that our daughter would have a shorter and bowed right femur bone. It was the biggest hit in the face of my hole life....especially her being our firts kid. Since her birth we have been through a lots of appointements for her condition, and they are planning on a first lenghtenning surgery around 4 years old. It seems so far,... Today she is 11 months....she never crawled but she bum shuffle. She has an orthodic that she wears when she stands.

PFFD

I am the mother of a 28 year girl who was born with PFFD. At the time of her birth ultrasound was not being used that frequently and I had no problems so none were taken. It was a total shock when she was born with a very short leg. The orthopedic doctor came in and told me that she would probably have to have her leg amputated and she would probably not walk. Of course we were devastated but after consulting with a pediatric ortho we were told this was not so and she would lead a pretty normal life. She was just a beautiful litlle girl and we took her home and loved her.

"How to Train Your Dragon" movie

I wanted to recommend the movie "How to Train Your Dragon". Most PFFD patients at some point in their lives will need a prosthetic device. This movie shows how those wearing a prosthesis can be strong and valuable to society. It's rated PG for sequences of intense action and some scary images, and brief mild language. I really LOVE this movie.

Beth

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