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Summary of my story

I was born with PFFD in 1986. My parents discovered the Shriners Hospital in South Carolina when I was 6 years old. Until the age of 18 that had been been my place of treatment. We had been encouraged to go with amputation. My parents felt even at the age of 6 it was my decision. Of course, at age 6, 7, 8 (every time it was brought up by any doctor) I opted out. The decision to keep my leg wasn't even a question and at age 22 I am still happy with my decision not to go with amputation. I think it was the best decision for me personally, although I know that it may not be for others. The Shriners hospitals have an amazing staff who worked with me to customize the best prosthesis's for me. I have never had surgery of any kind. (Unless you count having my tonsils and wisdom teeth removed, ha) Any doctor I have ever been to has been amazed at how well I get around. A lot of people don't even notice my prosthetic at first. I have lived an extremely normal life and have been blessed to do most of the things that I want to do in spite of my situation. There have been times that have been really difficult, physically, but mostly in my case, emotionally. I have great mobility with the prosthetic I have now ( I have a special prosthetic due to the fact that I am not an amputee and so I may not be as mobile as most. I don't see my day to day life as a "struggle" as most people probably would. I have grown accustomed to my "struggles" and am an expert at overcoming them. :) I decided to join this sight in the hopes of gaining the latest information on PFFD, treatment (options) and finding others out there who can relate to me. I would love to talk to anyone who has question's or anyone who knows if there is any alternative (besides amputation) for someone at my age.


I am so glad to hear your story. We have a 17 yr old, we have been to the same hosp. as you since Justin was 1. Like you he has had no surgeries(his choice).We are now in Florida to see Dr. Paley as our son wants to try lengthening.His first surgery is August 6th.
Love to know more about your situation and maybe have you to talk.
Wish we would have known about each other at Shriners of Greenville.

It's so nice to be able to talk to someone who can relate to my situation...I hate that we were never able to meet while I was going to the Shriners Hospital. The doctor's there always told me of the cases that had PFFD who had opted for amputation. They looked down on me and my parents for not going with amputation. Before I left (I was still under age) the orthopedic doctor who helped me wanted to make me one last prosthetic. The main doctor (I dont even know his name) wouldn't allow me to come back. He didn't think it was "necessary." In my case that was a blessing because the orthopedic doctors I see now have made me the best prosthetic I've ever had! :) It's much more cosmetic, durable AND comfortable.
I wish I had known about Dr. Paley sooner, I actually just learned of him. I've never heard of him before but I am VERY interested in finding out everything I can. With me being 22 years old, I didn't know if lengthening was still an option or not. I would love to stay updating on your son's experience. Thank you for taking the time to message me. Talk to you soon!


Look on line for Dr.Dror Paley, He just moved to Flordia.
If you email him he will respond himself. Justin is 17, and when I contacted him he said he had lengthened several adults with pffd successfully.
I know the Dr. your referring to it was the chief of staff, we had a lot of the same issues there. My son really like Ron and Ed.

Can you upload some images of the type of prosthesis you have now? I think we've done the same thing with our daughter and would love to compare and/or discuss.

Give me a few days and I can upload some pictures of my prosthetic. In all honesty the one that I have now has been better than any prosthetic I have ever gotten from the Shriners Hospital in Greenville, SC, though they were good too. The place where I get them now makes them much more cosmetic AND comfortable. Of course, there's always something to complain about with any of them. Nice to hear from you!

hi, my son is 1 years old born with pffd of the r leg, about 4 inches shorter than the left. were going to try the shoe lift . noy sure if it will be to heavy for him to lift. he stands and crawls, but cant walk because of being off balance. how much of a difference is yours

im not sure what the length difference was when i was a baby but now that i am full grown the difference is about 6 inches, i think. i never tried a shoe lift, i dont know that i would recommend it. i used to walk on the tips of my toes all the time when i was little and got around fine. maybe he just needs a little time to adapt and he will learn how to get around with or without the shoe lift.

Hello, Ana. My son was born with a leg length discrepancy in his right leg. His femur and tibia/fibula are short and his right knee and ankle turn in. He only has 4 toes and a smaller foot on that same side. At 2 1/2 years old he is so inspirational! He has a 3 cm lift and runs and jumps better than any 3 year old I've even seen. When he is barefoot or just wearing socks he favors the smaller leg by walking tip-toed. We see a pediatric orthopedist at Children's Hospital in Philadelphia.
We buy our shoes at Stride Rite and take them to a specialist every 3 months to have the lift shaped and glued onto the bottom of the shoe. They actually cut the shoe open and place the lift in the middle of the sole. (sp?)
I would love to talk to you more about your son. How is he making out?

I hope it goes well for you. our visit was wonderful, yes we found out that Justin's was worse than we ever thought
but it is correctable!!! We loved Dr. Paley and are so thankful that we were able to meet with him. We are now starting to prepare for our August trip.
We live close to the Asheville area and would love to meet, We have only got together with 1 other person a boy from Shriners. His family ended up moving away. He was 7 years older than Justin and had never had a surgery.

Just let us know
Take care,

Hey that's still good news, its correctable!! That's amazing news! I'm really happy for him. I would love to meet you guys. I'm not from SC though, I live in Florence, Al. What is the length difference in Justin's leg, if you don't mind me asking? Mine is somewhere around 6 inches I think, a little more a little less. I really want to meet Dr. Paley and see what he thinks about my situation. I'm SO glad you guys had a good visit with Dr. Paley, it's really encouraging to hear other peoples good news! Maybe once I make an appointment with him, and if you guys are in the same area, we could meet. Please keep me updated on whats going on. Talk to you soon!


His leg difference is 10-10 1/2 total. He has a 1 1/2 inch on the lower leg and the rest is in the femur. He also has a knee that is not lined up with either bone in his leg, he was also born with out the ligments in his knee. It is also smaller in size and pops in and out of place as he walks. His hip is also abnormal. That is why his first surgery with Dr. Paley will be the super hip & knee surgery.

Dr. Paley is the only Dr. that has ever given us any hope for Justin.
The rest just pushed amputaion, My question is why would that help? with his problems. That would not have corrected or helped his knee or hip.
I am not one to promote one Dr. over another have not in Justin's 17 years. However we do Promote Dr. Paley!!
God Bless you ,

I'm not sure about the specific measurements in mine, PFFD has always been hard for me to understand and I've lived with it my entire life! ha...
My knee is a lot like Justin's. It's extremely unstable and pops in and out of place. I have to be very careful with it. I have injured it pretty bad in the past, that's why my orthopedists are very precise with how they make my prostheses so it will support my knee. I never completely bend it unless I'm sitting down and I have to. Straightening it back out requires me to consciously pop it back out of place (or in, not sure which is which honestly) I always walk with it straight. If I could just get surgery to fix my knee I'd be happy! My hip is a type A. As far as the rest I'm not really sure.

I just want to thank you for writing me and responding to my messages so quickly. I'm a little amazed with the things I've researched since last weekend. Hearing Justin's story gives me so much hope. All of my doctors have pushed amputation also. They were really discouraging. I've heard so many wonderful things about Dr. Paley and I'm anxious to meet with him!

God Bless!

Julie, Just wanted to check and see if you have your appointment.
Hope it is going well.

My mother really wants to go with me to Florida for the appointment and we both have to work around each others schedules so I haven't made one yet. I have to wait until we both can drive down there :/ Hopefully I'll be able to make one soon! I'll keep you updated. How are things on your end??

God Bless

Hey Julie, I wanted to let you know about Allegiant Air. It is not everywhere, maybe one in your area. Anyway the flights Are dirt cheap as in $50 each way. We are not big on flying but at that price and less travel time that might be the way to go.
We are doing good, having lots of benefit yard sales, Avon fundrasing and other things to raise money to help pay for this upcoming trip.
I am sending my personal email & numbers as I will be using them while we are down for his surgery.
Please feel free to email or call anytime you like as it will be harder to check both during travel.
828-645-4904( We can call anywhere free)
Your in our prayers,
Cindy Gustavson

Hi! Thanks for sharing. My daughter, Sami, has pffd, and we have opted to leave it be. Like your parents, it will be her decision. However, she gets along great. I would love to see pictures of your prosthetic. I checked out the link...but I'm not sure how to navigate the site to see how yours looks. It's great to hear a positive turnout from somebody without amputation.

Hi! I haven't had any major problems with mine. I would say (at 22 yrs old so far) the downside to wearing this prosthetic is the mobility factor. Since I've never had any prior surgeries my leg fits down into the prosthetic with my foot facing down. I can bend my knee...but since its so unstable (& not even with my other knee) I have to keep it straight all the time. Which means simple things like sitting in the backseat of a car can be a task. I have to have plenty of leg room because my prosthetic is so long. It's more annoying than anything because those are the times when I do notice that I'm different. It's not a bad thing, just an annoying thing. Walking upstairs is the hardest thing. I can, but I walk up one step-at-a-time. That is just embarrassing because people notice. It's too hard to lift the prosthetic even though I can bend my knee. I do, however, get along great. Those are just the main things I struggle with, I can do most of the things that I want to, I just may have to do it a different way sometimes. It's only annoying when people notice. Most of the time it takes a while for people to notice. :) I meant to post pictures of my prosthetic when I first joined the site and I've never gotten around to it. I will try to send you some soon. Do you have a separate email address? I will try to post them on here if not.