Personal Stories

Hello, everyone. I am new to this group. My son, Denim has of course PFFD, bilateral Class C/D. He is 22 months old. We live in Oklahoma City and go to the Children's Hospital here and also to the Shriner's Hospital in Shreveport. I was reading where a physiatrist might be of help to us and was wondering if anyone could recommend someone. My son has no hip sockets and no femoral heads so it looks like lengthening is out of the question. He is doing really well crawling on all fours(hands and feet no knees).

I am a 37 year old female with PFFD. At age 5, I had the Van Ness Rotation and hip reconstruction at 5 and 7. The last time I saw the DR that did my surgeries was age 11, and until recently I really never had a doctor that didn't have to look up PFFD in the medical books. My current doctor is very familar with PFFD's and Van Ness. Recently I went to him with questions, but came away feeling let down. I guess the big question is what can I expect in the future as I get older?

My name is sinead and i'm sixteen. i have PFFD on both of my legs but my left leg is longer. I was born to a diabetic mother. When i was born my mother didnt really know what decison to make. The doctors were trying to lean her into amputation. She opt. not to, she wanted me to make the decision when i was old enough. so for sixteen years, i've wore a lift. It's been very hard. with the lift, i can't wear normal clothes only long pants. by that, i've become self-conscience and developed low self- esteem. I wouldn't feel comfortable in large crowds or at school either.

My daughter will be 21 soon and we are looking for some support, advise on anyone who has PFFD and is pregnant. She is approximately 6 WKS pregant. We are pretty excited but concerned at the same time. Please write to me and let me know. Thank YOU.

Our son Jacob has PFFD Type B. He has had 3 superhip surgeries over the last five years, peformed by Dr. Paley at the Rubin Institute for Limb Lengthening in Baltimore Maryland to stabilize his hip. Jacob recently had his first lengthening surgery performed by Dr. Paley on June 15th 2007. Jacob is now recovering well and he is having physical therapy at the Rubin Institute's therapy department. Jacob was born with a hip that was not fully formed and a very short femur. Dr. Paley was the only doctor that would and could help our son to correct his hip first.

My 3 and a half year old son Romie is going in at 7am (June 27th) in the morning for his super hip surgery at Shriners with Dr McCarthy in Philadelphia and I am so so so nervous and worried about everything. I would really like someone to share their experience of what the after effects are like and give us the heads up on what to be prepared for. Please help.

Madalynn Arrives:

My son, Brayden, was born on June 20, 2006. When he was born we had alot of problems with him. He scream and cried all the time. We didn't know what was wrong with him. We seen several doctor's. It wasn't until January 2007 that the one doctor we say requested a MRI on him. We then found out the reason behind his crying, etc. He was diagnosed with a mild case of Cerebral Palsy and we were also informed he had PFFD in his left leg and arm. More so in his leg. From there we have been though a year or more doctor's and therapy. He is enrolled in Physical and occupational therapy.

I just wanted everyone to know that there is a new book out there entitled "Poster Child". It was written by a woman who had unilateral PFFD and was the poster child for the March of Dimes in the 70s. She went to Harvard and was a Fulbright scholar - and is obviously a VERY high achiever!
It is very interesting ... though I have to remind myself that a lot has changed since she was undergoing treatment.

Hi everyone, just thought id share this with you, Tom has just turned five and is in his first year of school, he has been enjoying p.e but just could not climb over the top of these aparatas, couldnt get his leg over the top!
His teacher called me into school and gave me this photo, aparently after a whole term he had managed it!! even made Mrs Mee cry with happyness!
now he can do it everytime, he never gives up at anything, he evem has his first sports day tomorrow!!!
anyway love and hugs as always enjoy the photo of my superman
love Sally
xxx