My name is Sinead and I'm sixteen. I would like to know if women with PFFD had gotten pregnant. I have Sacral Dysgenesis and my doctor said that can be a factor on me not menstrating. If any women had problems with their pregnancy. If any women have Sacral Dysgenesis please contact me.
My daughter Cobi was born with PFFD. I had 2 sons at the time and when she came into the world I was estatic. She was placed beside me wrapped up and I had 20 minutes of absolute delight until the Doctor checked her over and then came the bomb shell.
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?
Triple Knot Productions, Inc has produced a documentary about three young Shriner patients and how they overcome their medical condition or disability. "Going For The Gold: A Tale of Three Kids" centers around Hannah McFadden one of the three Shriner patients who was adopted form Russia at a very young age and was diagnosed with PFFD. The doc tells her story while competing at the National Junior Disability Championships, a Shriner version of the Special Olympics that were held in Tampa, Florida.
My 8 y.o. son, BJ, just had rotational plasty a year ago. It has been a tremendous relief for us seeing that his limb was preserved vice amputated and for him, his prosthetic fit is better than before. For the past months, he's been complaining of back pain on his left side (the rotated side). Has anyone experienced what he is experiencing right now? Will this be outgrown? Other insights? -Ping
The Children's book that I wrote received a high rating from the editor...which is GREAT!!! It really really looks like the book will be published!! I know this is going to have such a positive outcome for children with PFFD and other limb/extremity differences. The publisher is actually talking about 'The next book!!"
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.
