Personal Stories

Continuation of My Story

Hi! I posted the blog a month ago "Summary of my story." I just wanted to update everyone on what's going on with me. Since doing my research a month ago & joining this site I have decided to make an appointment with Dr. Paley to see about leg lengthening. I haven't had any prior surgeries, I just wear a prosthetic now and I get along well, but since hearing about Dr. Paley I wanted to see if lengthening was an option for me. I have made my appointment for August 7th. I will update after my appointment once I know more about my options.

God Bless
-Julie

Update

Hi,

Julian

julian is now 1 years old, we went to see dr.davidson @ chop in philly. what a long visit. i just get so frustrated with everything. now they gave me a script for him to try a shoe lift with a wedge or pipe in foot im not sure what that means. his leg is now about 4 inches shorter than the left. he wants to walk so bad but cant. im getting so frustrated. 1st the drive there is 2 hours, we wait for about 1 hr ,1 1/2 hr for the dr to be in the room maybe 10 minutes and say we'll see u back in 6 months & do xrays. he wants to see if julians hip will form any more.

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.

New to the site and here to help if I can

Hi everyone,

Timeline

My son Zach has pffd on his right leg. We met with Dr. Davidson on 5/6 and we now have a timeline for his first surgery. Zach needs an inch orthodic list (which i am attempting to accomplish) and he will have two surgeries. The first surgery is to be when he is between 4 -5 years old. Its definately different. i see my little man walking on one set of tippy toes but boy does he move. i really want to get him sandals for the summer but really dont know if i can being he needs a lift. I'm going to try. can anyone share as to what i can expect now that he is moving?

Beginning Our Journey

We recently adopted a 15 year old with phocomelia of UE and PFFD. Yesterday was our first appointment with an orthopedic surgeon to discuss the options we have for our daughter at this point. She hopes to continue with leg lengthening procedures despite her hip most likely needing reconstruction and her knee without ligaments. Her foot is fully functional even though her left leg it is 6-8 inches shorter than her right. She also has scoliosis that causes her pelvis to turn.

21 year old with PFFD

Hi my name is Yesenia, I am on here because I want to see what people have accomplied or done to make them walk better. I been learning lightly alot these days about my condition, never really wondered or cared sadly. I just learned not to learn ago that I have PFFD, when I was about 1 1/2 year old I was amputeed on my left foot so that they can make a stump out of it. I wear a Prosthesis. I've been seeing alot of doctors trying to see if there is any chance that either a total hip or artificial hip could be done. I tell you it is tough even in how the economy is right now.

Shanes trying a new ortho

Hello all we have had no hope with ortho Drs or shriners

first they said it was nothing maybe a shoe lift and thats it then he is going to be feet shorter on left side and amputation only option then shriners said it will be 5/ 6 inchs shorter on left side and amputation was the way to go but then they sent report to Ortho and primary Dr that says it is estamited at 3 inches shorter so fed up with stuff going crazy!!!!!

She made it to the top - Mt Kinabalu

Further to my post a few days ago, Emma SMS me earlier today and said 'yes I made it'. So how's that to be standing at the top of Mt Kinabalu, age 13 with PFFD and a prosthetic leg with your school mates! Yes I do know that there are a number of disabled mountain climbers with prosthesis ... but when it is your own child born that very special day not so long ago, and you've really wondered (and worried) about their lives, and the opportunities they will get (or you think they will have to fore-go when they were born), it is still pretty darn neat to hear her say 'yes I made it'.

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