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Hello Everyone!
My name is Dyana, I am 24 years old, and I was born with unilateral pffd. The birth defect affected my right leg. I have about a 4 inch difference now. I had the Ilizarov procedure done when I was 8, and I am currentyly undergoing a procedure similar to the Ilizarov, but it utilizes a Taylor Spatial Frame. I had curvature of the bone below the knee, and I am getting it corrected. I have read several blogs here and have become very enlightened with everyone's stories. We all share similar struggles, and it's good to know that we are not alone. Well I am going to try and continue to keep this blog up and hopefully meet some very interesting people via this website. Please feel free to write to me anytime! I hope everyone is well. By the way, I am from Miami, Florida. Anyone near the area?
- onein150k's blog
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your procedure
I am glad to hear from someone that had the lengthening done many years ago! What was the condition of your hip? Also, are you glad you had the lenghening? Do you have any negative side affects, pain, loss of mobility? Are you able to run and walk daily without limitation? Where did you have the lengthening done at? My baby has unilateral (right leg) and we are in the fact gathering stage and trying to decide between amputation and lengthening.
Hello Rachell!
Pleasure to meet you =) My hip was in pretty good condition. When I was born, my femur bone was dislocated (my femur head was too small to stay in place), so I had a metal plate put in with screws to hold it in place. I am very glad that my parents chose the lengthening for me. Luckily, I have never experienced any negative side effects. I don't have the best flexion at my hip, but my knee and ankle are both pretty good. I can run, walk (although with a little bit of a limp), swim, ride bike, pretty much anything you can think of, without limitation. I may not do it as well as the next person, but I do it. =) The lenthening was performed at Columbia Presbytarian Hospital in New York. Deciding what to do is not easy, but as long as you offer your baby a lot of love and support, he/she will do wonderful! Hope to keep in touch! Where are you from? - Dyana
Hey, we live in the same state!
I live right in St. Petersburg. Oh I'm sorry, my name is Sinead and I'm sixteen. I feels so good to have a PFFD patient like me in Florida. I currenly am still going to Shriners. I haven't really done anything about it, only a prothesis (but not amputation). I've been thinking of doing it for the longest time, now. My doctors said i wasn't a very good canidate for lenghtening. I have class D, the most severe. But just on my right leg. My other is short to too, but you can't really notice. I'm still in high school, I go to Boca Ciega, a junior. I've really heard of those procedures you talked about. Iwould really like to know more. Hope to keep in contact.
Hi Sinead!
That's so cool that we live so close to each other! Since I have the least severe class, I was able to try the lengthening, and luckily I had a good outcome. I don't remember much about the lenghthening done when I was 8, I think I blocked it out of my memory or something. The procedure that I am currently undergoing is more of a corrective surgery for bone curvature, but I was able to get almost an inch of length out of it. It hasn't been very painful at all, and besides not being able to drive, it's been a good experience for me. I am very independent and it's hard for me to have to depend on people. I am very happy that I went along with it though. I don't have much time to write right now, but I would love to answer any and all questions that you may have for me. So, let me know if theres anything specific that you'd like to know. Hope to hear from you soon! I have pics of the frame that I have on right now, I think I'll post some pics in a new blog. -Dyana
Looking for a friend
Hi Dyana, I am new to this site. I have an 8yr old little girl who was just asking me to find someone "Just Like Her" and I can't wait to show you to her when she gets home from school today. I think it is wonderful that you are so positive and believe you will be a great inspiration to many people. And today that person will be Maddy. We also live in Florida, Pensacola to be exact. A little background: she has unilateral PFFD in her right leg and had Van Ness Rotation Plasty when she was 2. She is fantastic child who is fearless in everything she does. Take Care and I hope to read more from you.
April
A.K.A. Maddy's Mom