You are here

I am an adult with PFFD with a daughter also affected

PFFD for me has been a lifelong journey of finding HOW and WHY not only for myself but for my affected daughter ( age 18 now) who has a more sever casse than mine and requires surgery NOW.

I had both hips replaced at age 44 but had conplications which caused me less mobility than before.

Want to receive comments from others with PFFD or children with PFFD.

Thank you,
Lillian

Comments

Hi Lillian,
I am very interested to hear that your daughter is also affected by PFFD, I wasn't aware it was a condition that is hereditary? I have bilateral PFFD and always thought it was just one of those congenital things that can occur, not like Thalidomide which had a causing factor, the drug being taken. So I never assumed your offspring could also be born with PFFD, or is it just a huge coincidence? I'm engaged and hoping to have a family in the future, it is interesting to know if it can be inherited. Is PFFD something that can be tested for? I haven't got a clue. Don't get me wrong I know what my life has been life like so far, if one of my kids were to have PFFD then so be it. It will be interesting to hear through this forum if there are more cases of PFFD within the same family.

Dave Bailey

...that the condition isn't hereditary, in fact this is the first I've heard of such a thing. I've had 2 children, neither with PFFD.

Hi

My son is 19 with PFFD.He is however fine with his prosthesis, not having had any surgery beyond a failed attempt at hip fusion 13 years ago.He walks with the aid of a stick,enjoys computers and motorbike riding,and is studying electronic enginereering. What surgery does your daughter require?

I have also for years been searching for the HOW and WHY

Regards Graham

my sister has pffd and she is 16 years old she had the van nes thing and has to have surgry every 3 years to re rotate it but she is still very atletic she is a diver. well i was just doing a school paper so best of wishes to both of you.

bye..