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Long Term Wellness Study

Hello everyone,

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.

This study would probably be finished be too late for our daughter, but I think
it would be valuable for future childred with PFFD.

We'd look at prosthesis vs surgery vs type of PFFD. One thing I think we'd need to do is expand the PFFD classification system. The A,B,C,D Aitkin system is way too limited in my opinion.


I think this is a great idea. I agree it may be too late for our children, but if it helps others I would do it. I wish we had more studies of adults who have gone through the lengthening process and what their thoughts are now.

I'm a 37 year old pffd. I'd be more than happy to add any info you need to the study. It's a great idea and I think it can provide a lot of hope. All in all, I'm doing pretty well and I think parents would like to hear that.

I think it would be interesting to see the results of this type of study. Have you contacted anyone yet about it? I'm surprised nothing has been compiled yet. Please keep me updated on what you find out and let me know if there is anything I can do to help.

Thank you!! I think it's a great idea. Anything that can help people in the future is worth the time now.

I think it's a great idea. You might want to talk with some of the physicians and see what they have done. I participated in a study about PFFD and arthritis about 12 years ago. There may be literature out there in some form or another. Anecdotally, the people I know with PFFD do not have as many of the same issues regarding overall health as the rest of the US population - very few if any of us are obese! We are all too physically active.

I am a 49 year old pediatrician with a unilateral PFFD. I had hip surgery when I was 6 years old, amputation of the distal part of my foot (my toes) when I was 10 years old, and a Symes amputation and fusion of the knee when I was 14 years old (in 1971). I wear an above knee prosthesis with a C-leg unit which allows varied gait patterns when I walk. I am very active, walking all day during my work and taking care of my family at home. I have two children- now in their teens. Without my prosthesis, I swim, downhill ski (on one ski with outriggers) on intermediate/advanced terrain, row single sculls, and kayak. I have had wonderful prosthetists for years and they listen to what I need and we work together to make it work.

I hope everyone who has a child with a PFFD will see that the long term prognosis for children with this problem can be excellent with good surgery, prosthetics and therapy.

I would be happy to give more information if needed.

I am a 33 year old with PFFD (amputation at age 7 and over 22 surgeries) and I agree that PFFD should not limit anyone in adulthood beyond some extra planning. However, I would love to see a study done to establish some researched and validated best practice treatments and maybe even outline some poor practices.

I have been unable to wear my prosthesis since age 17 due to a realignment surgery, which never healed and could not be made surgically strong enough for weight bearing. I would like to think more than one doctor would learn from the problems with my treatment plan. (if there was one...I often wonder)

I don't say this to scare parents because just expecting their questions to not be ignored and insisting on a clear treatment plan can avoid most problems. Unfortunately, my parents were from a time when you did not question the doctor. Plus, even using crutches and a wheelchair for mobility, does not slow my children or me down.

At 54 I have not had too many health problems do to my PFFD. I wear an AK limb and got around very well until I got to be around 50 now my knee is higher on my leg and I now wear a liner.I do have some problems now.But I still do ok.