PFFD VSG2

Our five year old will be having her first surgery this upcoming January. We weren't expecting it until much later. In fact the last doctor she was seeing took a "wait and see" approach and didn't recommend it until she was ten years old. We just met with a new orthopedic surgeon who is familiar with her condition. He recommended the super hip/knee in January followed by a lengthening at about age six.

Just a quick reminder that the monthly chat is this Thursday evening (8 PM EDT). Please see previous posts for details, or email icll (at) lifebridgehealth.org for instructions. Be sure to mention that you are from this site, plus give us a few details about age, and type of treatment so far. (We've started requesting that because we've had a few questionable inquiries about the chats lately, and want to make sure we don't let any troublemakers into the chat).

Lee

I gave a birth to little cute boy last july 2010 with PFFD and FH. I consulted many Doctors here in my region and worldwide..........to see what could be done for him..... each one is telling something different than the other ....... I found very nice ortho-pediatre "Prof" here in Dubai but the cost is very very high and medical insurance doen't cover the birth defect.....

Please help me to find some insurances that cover the case or hospitals that can do it for free or a partial payment. I don't mind to travel anywhere

Thanks.......

Same info as the previous reminder, except for the date.

Thursday Oct 7 at 8 PM. Please contact me at icll (at) lifebridgehealth.org for additional info and/or the password.

I'm new to this site, so please bear with me. I'm 57 year old with PFFD, who has successfully begun to lose weight by walkiing 3 miles every day. By all height/weight/ charts, I am 'morbidly obese; Can any medically-trained people estimated the ideal weight for a 3'10" female of large build? What exercises are 'safe' other than walking? Also. a visiting nurse told me in passing something re knowing my 'true height' by measuring my arm length. I beleve she called it "Vitruvian' chart. Can anyone explain this? Thanks
mary809@sbcglobal.net

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.

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 .

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!