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

MY JOURNEY WITH PFFD

My name is mwazhi my parents found out that i was diagnosed with PFFD at the age of one year ,eight months.They did not know much about it in fact they were told i a had a short hip disease.
My growing up was stressful and challenging i faced rejection from people around me including some of my close relations.My mother was my source of encouragement she motivated me to go out there and be me.She taught me the importance of self acceptance an self confidence,with that the people around me accepted me as i am.

my PRInce

what to expect after super hip super knee surgery

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.

PFFD And Not Loving It

Hi everyone. I am new to this site and so glad I found it. Though I have known about other cases of PFFD through Doctors and Columbia, it is different when you finally get to connect with those that have the same experiences. I am 35 years old with Bilateral PFFD. I have full functioning of both legs. I wear prosthesis for height adjustment and walk with a crutch for support. At birth my mother was told I would not walk, but I beat that battle at age 2.

CFD/PFFD chat on Thursday Nov 4

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

Looking for Medical advise & Help

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.......

Online PFFD/CFD chat Thursday October 7

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.

BMI

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

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 .

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