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Looking for people with pffd

Hello, My name is Kelly and I was born with bilateral pffd in 1978, my parents were told that I would never walk and be confined to a wheelchair.

I walked when was 3 yrs old much to the drs amazement! I havn't had any surgery as my pffd is severe and it has slowly deteriated with age.. I'm now 33 yrs old, still mobile and have a gorgeous 4 yr old son!!! My pregnancy was a perfect and it caused no problems with my disability.

My main issue now is as my condition is getting worse I have pains in my hips and knee and my mobility is getting very limited, although that doesn't stop me and I work as a nursery nurse, which I have been doing for over 12 yrs now.

I'm on the waiting list for an arthroscopy on my left knee...

Would love to hear from anyone with a similar condition as Ive heard its very rare... I was born in Jersey in the Channel Islands but now live in the UK xxx


Hi Kelly Laura,

Thanks for your message. I have never met a woman with our rare condition in person.
Herewith I send you my blog.
There are a number of pictures of me in it.

Nodays I am 44 years old and alive and kickig (I wish I could :-) :-)
Fortunately i have never had hip or knee problems. I have no hip joints and my knees were fused in a 90 dergree angle when i had my rotatio surgery when I was 4.

I wish you luck with your planned surgery and maybe you sent a few pictures of yourself

With love, Steph

Hi Steph,

Thanks for your reply, I have no hip joints either and my knees are fused at different angles, I'm 4ft 7 but lead a very normal lifestyle, its so nice to meet you as Ive never met or heard of anyone with our condition

Love Kelly xx

Hello, I too am a 46 year old woman with a bilateral pffd. I have no left knee and was told I wouldn't walk as a child. Still walking:) I wear a prosthesis on my right leg to make up for length since I have no hip joint on that side either. I have difficulty with the fitting of the prosthesis, but I still keep going for my 9 year old little boy.


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Hi Kelly, we are a pretty rare breed I'd say. From figures I've read online, the incidences of pffd range between 1 case per 50,000 population to 1 case per 200,000 population. Bilateral cases are apparently 15% of all cases, so I make that between 48-195 bilateral pffd cases in the whole of the UK. So not many out of a pop. of 65 million!!
(325-1300 cases of pffd overall, unilateral & bilateral) Prob thinking, what a geek!! lol :)
I have bilateral pffd like you, I was also born with half my left arm missing, stops at elbow level. I had bilateral Fibula Hemimelia as well (no Fibia bones in the lower leg, the thin bone) Do you have this also? If your not sure but have a dimple in both your shins, you probably do. Shin dimples are a pretty common side effect of this. I used to wear two prosthetic legs from about 2 yrs old, also a prosthetic arm. I had a hip operation to help one of my legs, but unfortunately on that side my knee stiffened up and after a some consideration of options, I had a through knee amputation on my right side aged 9. I then carried on wearing legs & arm till about 13/14 years old when I stopped wearing them altogether for various reasons and became a full-time wheelchair user. I'm 36 now, married with one 21 month old daughter :)
I sympathise with your pain problems. I do get some pain on my left side, which has never been touched so to speak. I think arthritis is a probable cause of this.

Interesting to read your post.

Dave x

God bless you. It sounds as though you've done very well. Congratulations with your son, you are blessed. I never had children. I just turned 88. Hope you enjoy as long and interesting a life as I.