Advice needed about adult prosthetics

Hi,

Firstly can I quickly say how helpful this website has been.
I live in the UK and have come across very little about my condition (it's never even been given a name) so it was quite emotional to read some of the stories and realise that I'm not alone.

Secondly, I'm looking for some help. I've had a growth defect since birth (so for over 30 years) and have had little surgical treatment for it.
My left leg is significantly shorter that my right. Although it is a lot smaller than normal I do have a full leg - hip, knee, and foot.
Over the years my foot has been trained to point downwards so that I can put it inside a prothestic that I do up around my leg (like a knee high boot) without the limb being to obvious or my trousers having to be unusually wide.
This design has served me well for years but is now starting to cause alot of pain in my foot and ankle (where my weight is being borne).

Do any other adults still have their foot and wear a prosthestic?
If so, I'd be very interested in the design as my prothetists have no ideas.

Many thanks,
Justin

From the uk :-)

Nice to read about some other people in the uk with pffd. I am 23 and have only just been told what my condition is called and have also found this site very helpful. Unfortunately i had my foot amputated at age 9 so can't help with your enquiry but up until age 9 i had a prosthesis that meant my foot had to be pointed downwards which did cause me pain. All i can recommend is to try and stay off the leg when it becomes painful and it also helps me when i keep my leg straight.

Hope you find an answer

Amy

Queary

I have a 22 month old daughter that is at the moment getting fitted for a prosthesis, she has her own foot pointing downwards like yours was, we have only had one fitting so far and she went crazy during this fitting, we taught it looked very uncomfortable and this has turned us off this type of prosthesis, have you any suggestions for us?

Not really

There isn't much you can do while your daughter is so young. It is uncomfortable but she will get used to it. It becomes part of life but i did keep the leg off as much as could and walked around the house on my 'good' knee instead. You will just have to try your best to get through seeing your daughter unhappy, she will eventually get used it. Sorry i wasn't much help

Amy

From the UK

Hi Justin
I am also from the UK and my daughter at 1 week old was diagnosed with PFFD,uni, left leg shorter. Sorry I can't help you with your question regarding adult prosthestic and I truly hope that somebody is out there who can give you some good advice. I hoped that you may be able to give me some advice. Hannah my daughter is 18 months old now and has just been given her first prosthestic which sounds very much like what you have, her foot is fully formed so they have given her a support with her foot pointed down, which allows her to wear her own shoes. Our physio is concerned that this type of support will damage her tendons, can you remember if you suffered in anyway?
I am glad to hear you had this type of support as the hospital seems to give me the impression it was trial and error:( Upto now I have never been shown what a high shoe would look like but I will talk about that when I go back to Alder Hey on the 8th May08.
Due to her age obviously they can operate on her at Alder Hey when she is 4 to straighten her femur and then lengthen at the ages of 6,9 and 15/16. Mr Nayagam at Alder Hey has given use some positive feedback, he looks at fixing her leg to full length.

Cheers
Yvette

Re: Advice needed about adult prosthetics

There used to be a nice site in Australia about this but it has dissapeared. I think this user ( http://www.pffd.org/user/27 ) has written about similar things. You might want to try contacting him/her.

Good Luck!

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