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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.

Intersting Article about a person with PFFD in an Ironman competition

From
http://www.transitiontimes.com/viewstory.cfm?ID=6626

The text is below also:

Title: Sarah Reinertsen: Don’t Give Up… Not Once…Not Ever
By Steve Brown - Editor, TransitionTimes.com

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.

Different type of prosthesis - success!

We tried the first prosthesis for a while (see first blog entry) - it was a failure. It caused bruising, it overheated her, it didn't breathe, etc. I could go on for days about all of its deficits. We were always upbeat about the prosthesis in front of her when we put it on her, but her reality over-took our spin. After a while she cried when she saw it. We got it adjusted a few times for a few months. One time we went in for an adjustment we met with a different prostheticist. We asked about other designs. He designed an extra-lightweight shoe lift that straps on to a regular shoe with velcro.

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.

Got a new prosthesis

Our daughter got her first prosthesis. It became obvious though that the person who designed this one was thinking of people who have amputations - not with people who have fully functional ankles/knees. This prosthesis, the prostheticist said, was desgined to remove weight off of the foot and transfer it to the skin/hip. Her first imaging showed a potential Class C Aitkins with a complete foot, ankle, and no hemimelia of the tibia - so we were a bit perplexed - but he said that's what is supposed to happen.

Alternatives to Illiazarov and Prostheses in the Treatment of PFFD?

My grandmother sent me an article in the New York Times which had some interesting new technologies. Both are designed with cancer patients in mind but I think they might benefit PFFD patients as well.

The first is a lattice made of biodegradable polymers infused with cells that have the capacity to turn into bone cells. Over time the scaffold degrades and is replaced by the patients own bone cells. Much of the research on it appears to be done at Rice University and the surgeries at Texas Medical Center. Some good web links are a general audience level lecture , some MIT class notes and a chemical engineering peer-reviewed article.

J's Story

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