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PFFD Picnic, July 30, 2011 in Northern Kentucky

Wed, 07/20/2011 - 20:01 — jcottengim

PFFD Picnic- Memorial Park

Location: Memorial Park
5409 Madison Pike
Independence, KY 41051

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RSVP at: jcottengim@insightbb.com
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For PFFD-Proximal Femoral Focal Deficiency

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More Info PFFD Picnic in NKY
Date Saturday, July 30, 2011
Time 11:00 am – 6:00 pm EDT
Where MEMORIAL PARK
5409 Madison Pike
Independence, Ky. 41051

PFFD: 
General Discussion

Zoloft

Wed, 07/13/2011 - 14:44 — waylonsmom

Just wanted to put this out there... Research is linking limb reductions to the use of SSRI drugs. Lawsuits are being filed against phizer drug company for the product Zoloft. Scientist have linked this drug to many birth defects including partial or total absence of limbs.

PFFD: 
New Research

Makani's Journey...so far

Wed, 07/06/2011 - 02:57 — ALOUDWHISPER

I wanted to share since i haven't been here since Makani was little.

PFFD: 
General Discussion

confused.

Tue, 06/28/2011 - 05:00 — shazz15

hi my sons 10 months kenzie and has pffd he also has a lot wrong wit his hip n docs say they will have 2 take his hip away n replace it with his knee or they will fuse it til his thigh which will mean he wont b able 2 move his leg from side to side,,, they have also said lenghening wont work and have gave us the option of amputating or a rotationplasy(foot turned backwards) its so confusing,, rotationplasty semms like a good option but im worried what kenzies reaction will be when hes older , will he blame me? i

Our 11 month old daughter has PFFD

Thu, 06/23/2011 - 20:40 — marc

When I was 25 wks pregnant, me and me husband found out that our daughter would have a shorter and bowed right femur bone. It was the biggest hit in the face of my hole life....especially her being our firts kid. Since her birth we have been through a lots of appointements for her condition, and they are planning on a first lenghtenning surgery around 4 years old. It seems so far,... Today she is 11 months....she never crawled but she bum shuffle. She has an orthodic that she wears when she stands.

PFFD online chat on Thursday June 23

Tue, 06/21/2011 - 17:18 — Lee

Quick reminder - Dr. Standard is hosting an online chat on Thursday June 23 at 8 PM EDT (US). This is on the subject of congenital limb differences, which includes PFFD/CFD as well as fibular hemimelia and some others.

This is a great opportunity to come chat "in person" with one of the surgeons at the International Center for Limb Lengthening, to get some initial information without having to travel. It's also a good way to meet other families with similar concerns. We have had more than a few pregnant moms do this chat too, for fact gathering.

PFFD: 
General Discussion

PFFD and having children

Mon, 06/20/2011 - 11:36 — mrsdyanagonzalez

Hi All! It is great to read everyone's experience with PFFD. I am a 27 year old female with unilateral pffd (right leg) and my parents chose lengthening for me along with using shoe lifts for any discrepancy still left. Though doc's have been able to lengthen my leg a total of about 5 inches, I do still have a diff of approx. 4 inches. I have an amazing life w/ amazing family and friends around me who have always encouraged and allowed me to be myself. I define my birth defect, it doesn't define me!

PFFD: 
General Discussion

older bilateral PFFD

Sat, 06/18/2011 - 16:41 — merrymary

HI! I'm a female , 3'10" with bilateral congenital absence of femurs, patellas, and illiums. I stopped using prostethics years ago, as I couldn't handle them. I'm getting incontinence from a 'dropped bladder' My urogynocologist isn't sure how to insert a 'sling' with all my missing bones. She inserted needle in my ankle to thread up toward my heart but at my waist, it went in directions she didn't see before and stopped. Does anyone have suggestions on how I can get a 'sling' proceedure. Thanks for any help you can give me.

PFFD: 
Long Term

PFFD

Wed, 06/08/2011 - 23:54 — roberta

I am the mother of a 28 year girl who was born with PFFD. At the time of her birth ultrasound was not being used that frequently and I had no problems so none were taken. It was a total shock when she was born with a very short leg. The orthopedic doctor came in and told me that she would probably have to have her leg amputated and she would probably not walk. Of course we were devastated but after consulting with a pediatric ortho we were told this was not so and she would lead a pretty normal life. She was just a beautiful litlle girl and we took her home and loved her.

21 week ultrasound shows pffd

Fri, 06/03/2011 - 10:13 — ljordan

Hi there I am from Edmonton, AB. i am 21 weeks pregnant and just found out our daughter has pffd, I am devastated. The doctor gave us the option of terminating the pregnancy in the next week, but I cannot do that. Her right femur is about half the size of her other one right now in the scans. Her lower leg bones are fine and has 2 feet. I am really sad and scared, will my daughter have a "normal" life with a prosthetic leg? We met with a great lady who works with pffd kids in Edmonton and she gave us some great options.

PFFD: 
General Discussion

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