If you are new to PFFD - I recommend starting with the PFFD book

new to this site as well

Hi! I’m 57 years old, woman with PFFP class 2. I also have a shortened 3rd nerve and muscle in my right eye, so I have no depth-perception. In the 1960’s, I went to Shriner’s Hospital for Crippled Children and my condition was called ‘congenital absence of femurs‘ . Until I was 13, the only treatment I had was ‘observation‘ every three months. IE walking up and down the hall while doctors watched me. I was shown my X-rays but didn’t know what the big deal was. When I was 12, I was fitted for artificial legs called ‘pylons’. I’m sure you older ones know what I mean.

Online PFFD/CFD chat on Thursday Sept 9

Quick reminder - the next CFD and other congenital limb differences online chat will be next Thursday Sept 9 at 8:00 PM. Dr. Standard will be answering questions about assorted types of congenital limb differences.

We will be using the same password that we have used the past few months. If you need the password or if you need instructions on how to join the chat, please email me at vbrady (at) lifebridgehealth.org .

Leg pain

Hello my daughter will be 2yrs old this Friday, she has Bilateral PFFD. She used to stand up a lot & would walk assisted but the last few months she seems to have pain in her legs. She won't hardly stand anymore or try to walk assisted. She says her legs hurt! She does however do her bear crawl on her hands & feet. I have asked the Dr about it & he says there isn't any reason she should be hurting & X-rays show nothing. I was just wondering if anyone else has experienced this as well. I don't get on here often but I will try & make a point to check it more!

Cost of super hip operation and each lengthening operation

Hi, as I wait for an estimate from Dr Paley's hospital, I would like to get a feel of the cost of super hip operation and lenghthening, and also duration between the super hip operation and lengthening. Are there extra charges/taxes for patients from outside US? Am from Nairobi - Kenya... Please Help

Simon

For anyone who has any questions about PFFD...I have PFFD and am 20yrs old

Hi, I am new to this site. Did not know it even exsisted. When I first researched about my PFFD there were hardly any information about it. But I am here for anyone to ask any questions. I am 20 years old , so feel free to ask anything.

Any one have any questions about PFFD?

Hi, I am new to this site. Did not know it even exsisted. When I first researched about my PFFD there were hardly any information about it. But I am here for anyone to ask any questions. I am 20 years old , so feel free to ask anything.

Raegyn my Rae of Sunshine

Hi, my name is Natalie and my daughter Raegyn is 4 months old and has PFFD of her right femor. We're just getting started on our journey and she already had one fracture of the femor. I really don't know what to expect and our doctor is kinda of a fast talker and is telling us that theres nothing to do right now, but as a mother I'm sure that most understand that when there's something wrong with your child your natural reaction is to worry. I would like to get in touch with someone to talk about the what-if's, the what next, and the how comes.

SSI

My name is Natalie and my 4 month old daughter has PFFD, it's about a 3 inch difference and her feet aren't the same size either. I've been denied SSI benifits once and I am appealing it. I was told that my options were lengthing, amputation, are the lift (to me if her leg only will come mid-way her calf of her good leg, if that). I would think that would be a very high and dangerous lift. I was wondering if anyone else was having or have had this problem with getting SSI.

Does anyone need a size 5-6 left shoe or size 9 right shoe?!

I have been a patient with Paley for years and have done almost 20 inches of lengthening on my right leg. However my feet are different sizes so when I buy shoes, I have to buy both sizes... No where at home lets you mix and match sizes so I was wanting to see if anyone needed right shoes in a size 9 or left shoes in a size 5 to 6??? I don't know what to do with them!!! I was an art major, so I made a dining room table out of some but with that project done - I am stacking up unused shoes again!!!

Dylan's Journey

Hello, my name is Amanda, and I am a parent of a little boy with PFFD. Dylan is 2 years old and was diagnosed last September (2009). He is scheduled for a hip osteotomy next summer (2011). I am not really sure what that means, other than that he will be in a cast from his chest to his legs for 4-6 weeks after that. I am afraid what that will mean for him, because he is a VERY active little boy. The reason I joined this website was to connect with other parents about what to expect in the coming months and years; from surgeries - to his entire future.

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