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

Chat online about PFFD and other LLDs on May 20

Just a quick reminder that Dr. Standard (and usually Dr. Herzenberg as well) is having his next online chat this week on Thursday 5/20 at 9:15 PM EDT. This is a great opportunity to get to talk to one, and often two(!), of the most experienced limb lengthening surgeons around. This chat will focus mostly on CFD (pffd) and fibular hemimelia, although there usually a few other diagnoses represented. Besides the doctors, another benefit is that you can chat with other parents as well for their input.

Shoes

Hey all!

I have a pair of little girls shoes, infant/toddler size 3w that have a 4cm lift on the left leg. My daughter used them for 3 months before they became too small. I would love for these shoes to go to another little one that needs them rather than sit in her closet. Please message/comment me if you have any use for them.

Jamie

Somewhat OT question regarding wedding bouquet and crutches

This is a weird question, but I don't really know where else to ask.

I have bilateral PFFD and walk with forearm crutches. I am getting married next June, and I'd really like a bouquet. Obviously, walking with crutches (one of my gifts from my parents is a special set of wedding crutches) poses some challenges to carrying a bouquet.

Does anyone have any brilliant ideas on what I could do?

TIA!

Linda

reading books for children on their condition and surgery

Hi everyone.

Please let me know if you know of any books that are available for children with regards to going for surgery and also for receiving a prostetic foot and leg. I'd like to know if there's something that explains it to children in their own language.

Thanks
Amanda
Cape Town

people affected by pffd in nairobi - kenya

Hi, am looking for people with pffd or those affected by it by being parents or friends/family of people with pfffd in nairobi, so that we can network and work together. Kindly get in touch with me, my email is skinuthia2001@yahoo.com

regards

simon

Shane

Hey all its been a while shanes almost 3 and growing like a weed!!!

News Story

I just realized that I had not updated everyone! Our family grew in February by 4! We now have 10 children. For those of you that I have not met, I am an adult with PFFD and congential arm deformities. My husband and I have two children by birth and eight by adoption.

To Syme's or Not to Syme's...

Hello everyone! My name is Megan and I'm a 20 year old university student from Iowa. Currently, I have a big decision to make and was wondering if any of you could give me some input. I have never had to have surgery to correct any aspect of my affected leg. I currently wear what is described by my prostheticist as a "clam shell" prosthesis-fiberglass, with a door fastened by velcro- and it had been working quite well for the first 18 years of my life.

CFD online chat this Thursday 4/22

Just a quick reminder that Dr. Standard (and usually Dr. Herzenberg as well) is having his next online chat this week on Thursday 4/22 at 9:15 PM EDT. This is a great opportunity to get to talk to one, and often two(!), of the most experienced limb lengthening surgeons around. This chat will focus mostly on CFD (pffd) and fibular hemimelia, although there usually a few other diagnoses represented. Besides the doctors, another benefit is that you can chat with other parents as well for their input.

Should we explain to him or not?

My son, Julian is four years old. Here lately we have been having issues with him fighting us when it is time to put his shoes on. We were thinking about explaining to Julian why he needs to have his shoes on but we have different ideas....

My husband feels that we should wait and not have a sit down talk with him trying to explain why or how he is different until the time comes that someone says something to him. He wants to keep that innocence that he has for as long as possible.

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