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

Online PFFD chat March 15

Quick reminder - the monthly chat is Thursday March 15 at 8 PM. This chat is specifically for conditions such as Congenital Femoral Deficiency (aka pffd) and Fibular Hemimelia.

For more info, or for the password, please contact icll (at) lifebridgehealth.org . PLEASE be sure to give a brief description of your child (age, diagnosis and treatment type thing) so that we know you aren't one of the spam emails we have been getting lately.


Toeing in

I am interested in finding out if anyone that has had the Van Ness Rotation surgery has problems with thier leg toeing-in while walking. I have always heard that the Van Ness Rotation de-rotates, but today a doctor told me that my toeing-in is at my hip and my hip has arthritis. I am not convienced. I get so frustated when you go to the doctors and they don't touch you, watch you walk maybe 12 feet, and look at a couple x-ray. Which I might add were taken while I was weight bearing, completely different from other x-rays in the past.

PFFD online chat February 16

Quick reminder - the monthly chat is Thursday Feb 16 at 8 PM.

For more info, or for the password, please contact icll (at) lifebridgehealth.org .

Dr Herzenberg and Standard should both be there.

shoe lifts

My 17 month old boy, Isaac, has a 1 inch shoe lift. Just wondering if anyone who has used shoelifts goes to a specialist that makes lifts specifically for people with pffd? The man we have gone to for lifts has never made one for a child before and also, he only makes them typically for people with very minor discrepencies. Any advice on this subject would be appreciated , thanks, Katie

Fighting For A Dream!! (For anyone who needs a pick me up)

Hey, My name is Megan Miner....I wrote my story about 3 years ago when I joined and decided it was time to re visit this site and update yall on all the exciting stuff thats happened to me since i left yall for about 2 years. For those who don't know my story, I'll give you the cliff notes version. I am bilateral, class D. When I was a little, the doctors wanted to amputate both of my feet and one doctor Dr. Tosi refused. She said she had a gut feeling that if she moved the mucsles around in my feet that maybe something extrodinary could come out of it.

PFFD online chat on Thursday January 12

Quick reminder since most of the details are in previous posts. The next chat on PFFD / CFD and Fibular Hemimelia is this coming Thursday. Dr. Standard from the International Center for Limb Lengthening will be hosting this week. This is a great opportunity to ask a very experienced limb lengthening surgeon questions, and even have him review x-rays if you would like.

For more info please contact icll (at) lifebridgehealth.org and give us enough background info that we know this is a 'legitimate' congenital limb differences request (vs the "I just want to be taller" requests we also get).

Daughter born 10/10/11 with Unilateral PFFD

My daughter was born with unilateral PFFD. It wasn't caught on any ultrasounds, so we were quite surprised when she was born. She is such a delightful little girl and perfect for our family. We're excited to find a community of others with PFFD to learn from and share with. I've started a blog to chronical our journey. Please feel free to visit: www.Elsiesleftleg.blogspot.com

We'd love to hear any comments or advice as we are just at the beginning of the journey. Thanks!

PFFD chat on Thursday Dec 1

Quick reminder - the next CFD/PFFD, FH chat is on Dec 1 at 8 PM ET.
Contact icll (at) lifebridgehealth.org for more info; please include description of your child so that we can tell the legitimate requests from the drive-bys.


My son Damian was born July 3rd, 2011. Throughout my entire pregnancy I was examined carefully because I have a cardiac pacemaker which I received about 3 months before his conception. I had a lot of ultrasounds and all the tech's and doctors showed a normal healthy pregnancy. My water broke at 3:30am July 2 and daddy and I took off to the hospital anxious, tired, and scared, excited...every emotion. 23 hours later on July 3rd Damian was born only 2 weeks early and a surprising 5lbs 3 ounces. The doctor asked "why is he so small?" I had gained over 50 lbs so we were all shocked.

Insurance/payment options for medical treatment

So my daughter will have her first surgery in September of 2010 and I am anxious on what to do with insurance! Is there any benefits, programs or good insurance companies anyone can reccommend? Im pretty clueless when it comes to insurance because I have never needed anything more than a perscription or two! Thanks!


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