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

Long time no see! Toms progression

Hey everyone, hope your all doing well and happy!
Just to let you know Tom is now nearly nine and is doing ever so well on his prosthetic leg!
He does everything all the other children do and describes himself as a normal child!
He is cheeky, a pain in the ass, plays footie , has many many friends, swims play mates, and has even managed to just about ride a bike!
We are all very happy for him aswell as his doctor Mr Monsell who is very pleased with Toms prognosis.


I am new to this site but have known about our son's unilateral PFFD since an ultrasound at 19 weeks. We are from Pittsburgh and have seen a pediatric orthopedic doctor at Children's Hospital since I was pregnant. Our son is almost 2 now and has been walking since 10 months and his PFFD does not appear to limit him in any way. He is a busy little guy and an absolute joy! My concern is that we are not being proactive enough. We are due back to see the doctor in two months.

CFD/PFFD online chat Thursday Feb 24 8 PM

Just a quick reminder that you can chat online with Drs Standard and Herzenberg this Thursday evening to ask about CFD. You don't need to be their patient to participate.

For additional info, email icll (at) lifebridgehealth.org and mention that you heard about the chat on this forum (we've had a few very strange requests lately and just want to make sure the people we give passwords to are legit).

20 week ultrasound shows possible PFFD

Hi, I was searching online for answers about PFFD and came across this discussion group. I have had 2 ultrasounds this week both showing that my little girl's right femur is shorter that her left, about 2/3 the length. I have not met with the orthopedic Dr. yet so I'm not sure if this is even the diagnosis yet. Just wondering, because of the grueling waiting game, if this is what was seen on ultrasounds of people using this site and were there any other things that the doctors thought it might be besides PFFD. I'm feeling really horrible right now.

New to the site

Hello all,

Where to stay while having surgery with Dr Paley?

If anyone knows where we can stay when my daughter is having surgery with Dr Paley. We are from out of town and don't know anyone in Florida. Any help will be appreciated.
Thank you

Come chat with limb lengthening doctors about CFD/PFFD

Just a reminder that Dr. Standard (and frequently Dr. Herzenberg as well) will be hosting an online chat on congenital limb differences. This includes conditions such as CFD, fibular hemimelia and a few others. Date Thursday Jan 20; time 8 PM EST.

If all of this is new to you, or if you have questions, please join us. If you have emailable x-rays, the doctors can review them during the chat.

Nash's Story

Hi! My name is Caroline. My husband Chris and I live in Iowa. Our son, Nash, is 5 months old and is an amazing little guy. We are so in love with him!! Nash has CFD of his right leg and we were first informed of his leg at our 20 week ultrasound. It was a scary and confusing diagnosis. Mostly because NO ONE knew anything about CFD or PFFD. We immediately went online and found some information. Dr Paley's website was very informative, which was so nice since this condition is so rare and there's not much out there.

Pain issues?

I am a 36 year old BPFFD woman. I have not had any lenghtening or surgery's and have full function of both my legs. However, over the years I have aquired a list of "issues" mainly pain. I have been all over (so it seems) for back and hip problems. The biggest problem is no one seems to know what to do for my "hip" pain. A prosthetic is not an option, as I do not have an actual hip or knee joint. This is just a nutshell of what's been going on. I am wondering if any other adults with BPFFD have suffered or are suffering from any sort of pain issues. I look forward to hearing from people.


My daughter will have to have another surgery this year to fuse her knee to the bones in her lower leg and try to stablize her hip. I am just wondering if anyone else has had this done and if it has helped. I do not want to put her through the surgery if it is not going to help. She is 5 so it will be different than when she was 15 months and had surgery. I would appreciate any advice you all can offer.


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