Hi,
I am a 23 year old women who has unilateral pffd to the right side. I have undergone many operations as a child including knee fusion and a foot amputation. I live in England and have just graduated from university with a degree. I have a fantastic social life and great family support. Living with pffd can be very annoying at times but so long as you always remember there are people worse off, you can stay positive. I wanted to post something that may help some people realise that pffd is a condition that is lived with. It does not run my life (however sometimes it does stop me from doing some things), it is part of my life, and my way of thinking is that it makes me different and special. I am different and i'm proud of that. If your confidence is kept high then nothing and no one can bring you down.
Best wishes to you all
Amy
Comments
my litter girl has pffd to right sizt to!
We are at the moment been fitted for a prosthesis that our daughters own foot will point downwards in the prosthesis but it will be straight. We have taught about amputation of her foot an get a prosthesis that can bend, she is 2 the end of august have you any advice for us? Thanks.
Louise.
Hi, Up until the age of 9 i
Hi,
Up until the age of 9 i was in the same situation. I was fitted with a prosthesis where my foot pointed downwards which was ok, but i couldn't bend my leg, obviously, this caused problems as simple as school assemblies, i had to sit on a chair when everyone else got to sit on the floor with their legs crossed. It sounds silly but you do feel different and you don't want to. I would presume that as your daughter gets older you will be given the choice to ampute. The only advice i can give is from my own experience and i have to say i am really glad i chose to amputate. I am still different but it is easier to forget i have PFFD because i fit in alot better now. Although i do have to say, it is nice to be different, it makes me more interesting too :-) You need to look at your situation and decide which is the best route, but i hope i have helped a little.
Amy
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Thanks!!!
Amy,
Thank you so much for your post!!! We get so involved with research and questions that we sometimes forget what our real goals are. Thanks for the positive reminder, and we look forward to hearing more details when ever you get the time!!!
Sincerely,
Chuck, Karla, Dylan & McKenna
Just curious
louise kavanagh here i have a daughter with pffd on her right leg, we dont know what road to take as to what to do, some people say go see Dr Paley in America, others say foot amputation and others say just get prosthesis and leave her foot alone (extension prosthesis), do you have any advice? and, i love your confidence and would be thrilled if my daughter was the same as you in a few years.
Thankyou
Thankyou very much, i wanted to write something that wasn't all morbid :-) The only advice i can give is through my own experience. I wouldn't suggest keepin the foot, as your daughter gets older she will want to try and fit in like everybody else and since she has no knee where it is supposed to be, when she sits down her leg will stay straight,. I have problems sometimes and i had my foot amputated, so doing general things like going for a meal could be quite problematic. I don't know Dr Paley, i was treated by a very dedicated team at Great Ormand street in London and i don't think i could have been treated by anybody better. I had complications and they were fantastic with me and live a very normal life. I hope i have helped a little and best wishes for your daughter, also you should feel proud because without family there to help and support us, we would be in a mess :-)
Amy
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Thanks
Thanks for getting back to me at what age would you recommend to get the amputation done at? Is it a very painful procedure? I would be very interested to hear more about the team you were treated by in London if you dont mind.
Thanks again,
Louise.
Very!
Hi, i would say the earlier the better to have amputation, i found it very difficult to keep up with the exercises my physiotherapist asked me to do. By the time i was ready to walk and able to do it without thinking i was around 11 (i had the amputation at 9) so i was at the age where kids don't want to do anything that requires alot of effort. So i now walk with a limp which wouldn't have been so noticable if i had listened to the physio. The fact i was getting older made it more difficult for my parents to make me do the exercises too as i was very strong willed and stubborn :-) (i still am lol). i can't remember much about the amputation but i kept a diary and when i read it back it shows that i was in alot of pain, and from family members memories, coming off morphine was awful!
The doctor that dealt with me is called Mr. Fixon but he has retired now. Fortunately he trained a team before leaving, and i haven't had anything to do with this team as i'm now an adult. But if they have 10% of Mr. Fixons talent then i would recommmend at least talking to them.
Oh and about the amputation i also had my knee fused at the same time which would have also caused alot of the pain. Unfotunately it was unsuccessful but i wish you luck with whatever you decide, it will be a bumpy ride
Amy