rar's blog

About our Prosthosis

I created a page about Prosthoses here http://www.pffd.org/prosthosis.htm. Hope you find it useful.

Riding a Bike

I thought you'd like to see a video of my daughter riding her bike. We use an "extension prosthesis" - what some call an "prosthosis" or a "Moseley-type device." The ankle is hinged and it allows nearly full mobility which she uses when riding the bike. The small length of the pedal arm means that she can use her shorter femur to lever the pedal.

http://www.pffd.org/sites/pffd.org/pffd_files/r_pedal.avi

Website updated - now you can "attach" files with posts

I've added a module that allows members to upload images and documents as attachments to posts. Now when you go to create a post (Create Content, Blog Post) you will see at the bottom of the page a section called "attachments." There is a two meg limit on the size of all files and all images are limited to 640x480 in pixel dimentions. If that's not enough let me know.

I may also (if there is enough interest and I get a few seconds of time) add some more functionality that displays thumbnails of images in the posts as well.

I will be using this to post a document that shows some of th

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

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.

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.

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.

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