I am 54 and found out 2 weeks ago that what I have had all my life is actually called PFFD. I was hospitalised at 15months old for 7 years at Chailey Heritage in Sussex. I had a bone graft at 3years old ( which I understood later had not worked). I was allowed to get a contraption strapped to me that let me walk at the age of 7 or so.
Once freed from a bed I was very active. I went through various types of supports. My PFFD, (I am not up to speed on all the terminology yet) is on my right leg with a femur length of maybe 2'' , its a guess because I have never been shown an x-ray. I had a Symes amputation when I was 16. The foot was perfectly formed and was actually quite an aid to walking as it gave a more positive feel to the direction my artificial foot was pointing in.
I played a lot of sport (that didn't need running over long distance) and could hold my own in a fierce game of volleyball.
I am father to 10 children of our own and they take no account of my disability, which is great.
I am about to have some x-rays taken of my hips and spine as I am beginning to experience pains that I cannot account for. I have been informed by the limb centre doctor that this is common for amputees. The information would have been helpful earlier in my life, it has all come at once, after damage to my body has been done.
I have never let my leg dictate what I can or cannot do, this has helped me achieve all that I have in my life so far.
I am self employed as a property maintenance contractor. I have basically self diagnosed my self and any pains that happened myself because I was left with the impression that there was not a lot to be said or done about it, just get on and see what happens.
Comments
jack
my son jack has pffd,no femur and bad hip.we are not planning surgery as we would likr jack to be involved as much as possible.he is only 17 months old and has a built up shoe at the moment.my dilemas at the moment are,should we go for a leg extension that keeps the foot in a natural position or is strapped downwards(this looks better).am also interested in your thoughts on amputation being done early,later or not at all.regards,vicky
Ayanna's PFFD
My one year old daughter Ayanna has PFFD, I think its class B of Aitkens classification. I am from Nairobi, Kenya. I feel very lucky to have come across this website where as parents we can share our stories and experiences, And also learn from those who live with PFFD, I have met one doctor here in Nairobi (after a long search) who told me that bone lenghtening will be possible for my daughter, this has been very good news for me. I will be taking my daughter for an MRI scan next month after which the doctor will advice. Am yet to get prosthesis for my daughter as was suggested by another doctor, I think I will see the bone lenthening doctor first. I would like to know how early bone lenghening can start. I would also be glad to get experiences from parents or those with PFFD from here in Kenya or other parts of Africa, Most of the stories I have seen are for parents based in US, and some of the suggested doctors and hospitals maybe out of reach for me for now. I would be glad to learn of hospitals/doctors/support groups who I can easily access.
simon