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

Comments

RE: Looking for people with pffd

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

re: looking for people with PFFD

Hi,

With the new server the "find someone" search is now working again. You can find other people in the UK (where you are)
using the following link

http://www.pffd.org/find_someone?aitken=All&treatment=All&uni_or_bi=All&...

Cheers,

Hello, I too am a 46 year old

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.

bilateral pffd

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.

http://www.pffd.org/node/268

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

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

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