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

Questions

My daughter was born in December and has been diagnosed with PFFD. I'm wondering what treatment options are available and what we should expect in the coming months or years. She is only 3 months old and this is all very new to us. She has a twin brother who is not affected.

Rotation Option

Hi there! My daugter, Sami, has PFFD...or CFD, as I was told yesterday. I guess it's more "politically correct." Sami is 7 1/2 months old and a complete JOY!! We went to see Dr. Paley yesterday for the 1st time. It was the first time we even saw an x-ray of her. Very interesting. Dr. Paley diagnosed her as "type 3." He said he "could" lengthen, but painted a very bleak future. He was much more animated when he spoke of the rotation. As parents, you know...we want the BEST for Sami...we are going to teach her to be strong, proud, smart, confident...know she's beautiful...just as we would if she didn't have this...PFFD. She's a WHOLE person...as you & your kids are...not just a leg...so my question (I'll get off my soap box, I'm actually prepping myself for when I have to talk to friends/family!!)

Second lengthening SUCCESS!.... plus Story of first lengthening from old PFFDvsg site

Jonathan's story has been posted under "Florida" on the other PFFDvsg web site for a few years now and is reprinted below. We were very happy with the results from both lengthenings although it was not an easy process. Both lengthenings were done at Shriners Hospitals--the first in Tampa and second in Twin Cities.

Baltimore Sun Article about Lengthening vs. Amputation

A must-read for anyone trying to make a decision:

http://www.baltimoresun.com/news/health/bal-hs.limb28jan28,1,842800.story

It doesn't really show more options than just lengthening or amputation. But I suppose in order to feature all the choices and to throw everything into the mix, the article would have taken up too much space.

Happy to have PFFD

I am a 25 year old woman with PFFD and I couldn't be happier. Despite what scoiety calls a handicap, I have lived a normal existance so far. I am so inspired by the stories posted on this site, I was excited about sharing mine. So, here goes:

I was born the oldest of what would become a sibship of two. My sister, Kelly, was born 18 months after I entered this world. While my sister is "normal" and I am not, we were raised to know that we are both the just the same. I believe with all of my heart that children are a product of their environment and I contribute my acceptance and life successes to my very supportive, naturally talented mother and father.

Lengthening vs Outcomes ?

Are there any people out there who have had a lengthing and are now adults (25+ yrs)? How have things gone?

PFFD: 

Our Daughter April 2003

Our daughter was born 5 months ago with PFFD in one leg (unilateral PFFD) as a class C or D Aitkens.

We had known ahead of time that she would be born with PFFD becuase we had discovered it during a routine ultrasound. The doctor who made the announcement was very discouraging, but that night we discovered the PFFD VSG as setup by Mike Malloy. It was more wonderful than words can describe. The stories there were uplifting, the people we contacted were very encouraging, and the information better than anything else we found. When our daughter was born we welcomed her into our lives fully with love, joy, and our hearts at ease.

PFFD - FAQ

FAQ (Frequently Asked Questions) for PFFD

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