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

confused

Hello,

I'm the mom of a 16 month old little boy who was born with PFFD in both legs. The doc here in Ohio told me to just wait and see what happens, while Dr. Paley in West Palm Beach, FL told me he could straighten out his hips and ankles, but told me he couldn't lengthen his legs. I'm afraid to go through with surgery...anyone worked with Dr. Paley? If so what was the outcome?

Thanks,

Amy

CFD/PFFD chat this THursday, December 9

8 PM EST on Thursday Dec 9.
Your chance to ask questions/opinions of one (and usually two) very experienced limb lengthening surgeons and other families.

For more info, refer to previous posts or email : icll (at) lifebridgehealth.org

(Note this is not strictly CFD; the talk also covers fibular hemimelia and radial club hand).

Lee

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

My son Kaheim was a normal baby until he started to walk we notice he Limps after Taking him to the doctor we were told he has pffd iam not even sure what type it is because the doc was telling US about an OPeration to correct it and it would have to be repeated about every 3 to 4 years and it's a possibility of AN infection and then amputation is a must his right leg is 3.8 cm shorter than the left he's only 2yrs old please help me I Live in Jamaica

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

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