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

petechiae

My daughter has been getting a petechiae rash off and on for almost a year. Her pediatrician thought it might be linked somehow to PFFD so I was wondering if anyone has had this problem. We're currently working on getting a referral to a specialist to have this check, but I thought I'd ask while we are waiting.
Thanks!
Lisa

fundraising for pffd

My grand niece will start the lengthening process in the fall. Her family will need financial help. Is there a national organization that can assist with this? If not, are there certain steps that need to be taken to establishing a find raising effort. Should a formal fund raising organization be established? If so, what are the steps that should be taken? Thank you.

How early can lengthening start?

Hi, My daughter Ayanna has unilateral PFFD. She is now 1yr 3 months, I was wondering how early lenghtening procedures can start? The doctors I have met have told me that they will advice me in due course!! I need to know to plan!! Please help

Simon

Having a Baby

I'm really pleased to announce that my wife Alex and I are expecting our first baby this coming Christmas.
We went for Alex's 12 week scan yesterday and thankfully everything looked normal, which of course is what every parent wants to hear. It was such a great experience, looking at little baby Bailey moving around, amazing.

Next online PFFD/CFD chat on June 17

Just a quick reminder that Dr. Standard is again hosting our monthly chat on congenital limb differences (CFD, fibular hemimelia etc) this Thursday at 9:15 PM EDT.

This is a great way to be able to ask questions without having to make an appointment.

For details on registering, please email icll (at) lifebridgehealth.org, and give the child's age and diagnosis, and mention you heard about the chat here. (Just being safe... we've had a few "questionable" people who have asked for info and like to make sure everyone is "legit").

Lee

plasma car

I know others have discovered this in the past on this site but I just have to say how much we love our Plasma car. This has been the best toy our son has ever recieved. We just put in wood floors in our whole house and our (almost 4 year old) cruises all over the place. It makes trips to the bathroom and trips to get more toys from his room fun and easy when his prosthetic is off. He hops on his "bike" and off he goes. We found it for $36.00 at Costco!

Dr Charles I. Scott Jr. MD

Hello,

Does anybody have an email address for Dr Charles I. Scott Jr. MD of the Division of Genetics, Department of Pediatrics at the Dupont Childrens Hospital, Wilmington?
I have found the website with information for him, but only phone and fax numbers. I'm in the UK and wanted to send an email, rather than a lengthy, expensive phone call.
This is all regarding the fact i've been told recently that he has done some genetic study with findings that on the maternal side on the X chromisone the condition seemed to have been passed on.

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

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