Kyle has bilateral pffd class (d )with no hip joints. At 4 he is only 30" tall and 25lbs. Kyle has other disabilities called pieere robin syndrome- he was born with a under developed lower jaw-cleft palate, ear tubes. Kyle has had 2 jaw distractions already. Kyle has has 8 surgeries already and Kyle also has a trache and a g-tube. With all of his issue's he is always happy and always playing sports, he dosnt sit still for 1 minute.
Wow. I am kinda overwhelmed by finding this site! I never knew the name of my condition before my husband brought home the People article about PFFD, much less that there were so many other people with the same thing.
I am 30 years old with, I guess, bilateral PFFD. My right leg does have a kneecap and a very short femur. I only had one surgery when I was 8 to remove part of the growth plate in my right knee so that leg wouldn't grow TOO much faster than the left (where there is no joint or femur).
I did introduce myself in the general forum, so I will try not to repeat myself too much. Like I said, I was born in 1948 and am bilateral.
I also was born with only one arm. There is just smooth skin where my left arm would be. I also only have four toes on each foot.
Hi, my name is Shawna. My son Jake is 2 months old (born on May 28th, 2008). He was born with unilateral PFFD of his right femur. My husband and I learned of his diagnosis back in January 2008 when I was @ 20 weeks pregnant. We went through a whole slew of emotions and had so many questions, but most of all we just wanted to meet our little man. Well, he is here and he is wonderful!
My name is Marcus Guenther, i am a 21 year old male who has bilateral PFFD and lives in Ohio. I never knew that anybody else in this world had the same thing i did until on of my friends mom's saw the article in the People's Magazine and they told me about it. I enjoy the outdoors, especially cutting grass. I work about 50 hours a week and i am about ready to graduate college. I drive a car with hand controls. I also have a twin brother who is 6 foot 3 inches and does not have PFFD. I have always been treated the same as any other person in my community.
Hi, my name is Kristen. My son Daniel is 11 months old and was born with unilateral PFFD in his right leg. I have never posted to this forum but I have found it to be so invaluable and look at it on a regular basis. This week I put together a blog for Daniel so that friends and family and other interested people can track Daniel's progress. I thought it would be worthwhile sharing it with the members of this blog as well so please feel free to take a look and forward it on to anyone else who may be interested.
The following is a speech that I wrote a few years ago when I was still doing Motivational Speaking. This speech has been given to kids elementary through high school. I thought perhaps anyone out there that is or has chilren with self esteem issues due to PFFD this could bring a little insight, and humor to your day.
"I have blonde hair and my friend has brown hair, but it JUST
DOESN’T MATTER! I am short and all my friends are taller than I am, but it JUST DOESN’T MATTER! My friend has blues eyes, you have brown eyes, but it (kids) JUST DOESN’T MATTER!
I had posted some information earlier about bike modifications and decided to look for more information since there was such a response. I must say I founded THE NICEST BIKE MAN IN THE WORLD who knows ALL about bike modifications for amputees. He's done many modifications and is familiar with options for both upper and lower extremity amputees. He told me it was OK to put his information up. His name is WALLY TUNISON and is phone number is 732-946-9080. He also has a website, www.bicyclehub.com.
Hi,
My name is Duane and I'm 60 years old, but until today, I never knew what my condition was called.
My daughter e-mailed the article in people magazine and told me I might be interested in it. I don't even know what unilateral or bilateral means. Since both my legs are the same, I guess I'm bilateral. I also don't know what the Aitken classification means.
