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.
Hi. My name is Aeryn and I'm 22 years old. I have been in a committed relationship for 2 years now and though I am not getting married or having children anytime soon I was wondering if anyone could give me information on the genetic ties of PFFD. I was born with PFFD in 1987, had four leg lengthening procedures, countless surgeries and my legs are the same length (as of July 2007). I have always been very scared that I will pass on PFFD to my children and have thus always wanted to adopt instead of taking the risk.
Hi everyone my daughter Sophia is 3 years old and she has pffd. She has her left leg smaller then her right. After the doctors gave us the option of leghtening vs amputation we chose leghtening. Now that she is 3 were are going to start with her fist surgery, which to straighten her left femur. She is going to be in a Spica cast for 6 weeks, and I just wanted to get some suggetions or experiences from people who had them or on their children.
Dear all ,This is Soni again , 30 years old with pffd , As there is pain and swelling in my good leg yet and I want to immigrate to canada and my life will be new , and doing work is hard to me , I want to ask is here any chance for me in Canada to get financial aid ?
Thanks a lot for your reply,
Dear All,
This is Sonia , when I was born I had a
problem in my one of my legs : Proximal Femoral Focal
Deficiency (about 50 cm) and now I am 34 years old .I use brace and I havent had any pain till now ,but recently I had joint effusion in the knee of normal leg and it had made me sad as it had been taken for 5 months till now and Doctor said me there is a very tiny extra bone on the upper part of my knee and it makes pain ,I am not sure if can I remove this tiny bone through laser - theraphy or not ? so I want to know is there any chance for me to transplant my leg or is there any other way ?
We were noticing that dysplastic hips seem to be common in PFFD. (e.g. the top part of the femur moves up and away from the femoral head and the acetabulum). This can cause the top part of the femur to carve out a new hip joint higher than where it would be normally. We were wondering if anyone in their mid-twenties (or older) has had osteoarthritis develop who did nothing surgically and/or had something done surgically. We are wondering because there doesn't seem to be any literature regarding this and we are meeting with a surgeon in 2 weeks or so to to discuss options for our nearly 3-year-old.
We recently have finished making a 2 dvd set showing McKenna's progress being treated for PFFD. These disks are the 4th version of this documentary that we have been sending around the world to families looking for information about PFFD. Now since we are not movie making professionals they are not the greatest as far as visual quality, or editing, but they do show McKenna before any treatment was done, then they show her after her first couple of surgeries to fix the "Bend" in her thigh bone. Then we included a video of McKenna at a doctors convention about PFFD which shows her initial xrays and Dr. Paley giving a brief description of her plan for treatment. After that we finish up with an interview with McKenna and show her today, at 8 years of age, after her 2nd lengthening. We also included 2 documentaries that show the lengthening process. These were done by news companies and they do show other cases of lengthening that don't involve PFFD, but the information shown is very useful, so we left those in too.
I'm interested in finding anyone with any experience dealing with adults with pffd. I am a unilateral, treated with Symes, fusion and left AK. I have no idea what Aitkens rating I am. My left hip was a mass of fused cartilage when I was born. I was treated at Mary Free Bed Clinic/Blodgett Memorial Hospital in Grand Rapids MI, now known as the Center for Limb Deficiencies. At age 7, I underwent 2 surgeries; the first, Dr. Charles Frantz literally sculpted a femur head and a hip socket out of the cartilage, in the second he fused the femur and tib/fib together with a plate. (I had many other reconstructive surgeries, but these are the pertinent ones)
I was talking to our prostheticist and asking about outcomes vs treatment and he said that there were no long-term wellness studies for PFFD. I was thinking that this is something we should do. This would be a long term project, but I think the parents of PFFD would be up to it.
I've done wellness database projects for some hospitals in the past so I feel comfortable dealing with issues of de-identification, HIPAA, etc. What we need - if we want to do this - is to survey doctors and prostheticists to see what fields, forms would be good to have. Pain scale, flexibility, mobility, and adverse events are all some of the things that I can think of off the top of my head.
