LCPD since 27 years, what should i Do?

Hi, Seamusc,

sorry to hear you have pain, i am from india, here also i am not getting any long term solution. every body telling me for hip replacement. but that is not the altimate because the life of the artificail bone is maxmimum 15 to 20 yeras. there should be a medicne which can intitae bone growth at child hood to avod in future.

right noe i am not having pain, but if sit on chair for long time it is difficult to walk a while after 5 to 10 steps then i can walk normal. i am doing regulary cycling & some excersises. 

Hi seamusc.when I was 15 I had a plate in and was taken out 3 or 4 years later.along with traction on and of for months.basically very similar to you,told I would be in a wheelchair by 30.its not happened!!thankfully.I have read up on perthes years ago and have also read up recently.I was told I'm not a text book case!!!I'm not sure what that means,I was told after my first child if I wanted another to hurry up as I wouldn't be able to have anymore,iv had 4 children!!!apart from hip replacements I don't no what else they do.I hope you get some information from your docter,and your pain eases

Seamus I am sorry you are struggling, and yes the information out there is still wanting.  No one seems to have explained to you and other adults that you no longer have Perthes disease, what you have is arthritis caused by the deformity of the head of femur when you had Perthes disease.  For someone who was diagnosed at 9 years old, you have done very well, we have a lot of people who have needed total hip replacement much younger than you.  There is a lot of research going on and our organisation is currently funding a new study involving both patients and consultants about the outcome of Perthes disease resulting from various treatments.  The truth is that no one knows what causes Perthes and despite a great deal of research over the years there is still no cure.  Most consultants now only intervene when there is no choice, but some still think an osteotomy is a quick fix and lots of parents are not told that surgery is just another way of containing the head of femur and not a cure.  We are working really hard to get imformation out there and to make the general public aware of Perthes disease.  We hope that the new study will lead to a much larger research program but in the interim it's good to know that hip replacements may well be made redundant in the next ten years with the new stem cell treatment.

Gill I can relate to that, I've also had 4 children and although I have used a wheelchair in the past I still haven't had a hip replacement.  I have had a knee replacement on my "good leg" apparently I put all my weight on it to favour my Perthes leg and wore the joint clean away, I was walking bone on bone.  But you and I are positive proof that specialists still don't know all about Perthes.

 

Were you told that to?I thought back then they obviously new what they were on about!!!sorry to hear about your knee replacement,iv been lucky so far!but hope its worked for you.its a real shame that specialists don't really no as speaking for myself its been physically and mentally hard work!!!!i hope that for all people with perthes that they find some kind of cure.

Yes I was, and the sad thing is that 100 years after the first discovery that Perthes was nothing to do with tuberculosis of the hip, they are still not much further forward in understanding the condition.  I have worked for Perthes Association for over 25 years now and we are still fighting to get enough support to increase  research.. we are getting there but very slowly.  Unless you have had Perthes yourself it is hard to understand how life changing it is, no it's not cancer, and no you aren't going to die, but you do miss out on a lot if you listen to what others think.  I haven't let Perthes stop me, I did everything I wanted and travelled the world, I'm now a grandma and walking is not great, but my wheelchair sits empty and at almost 69 I am very proud of that

 

I realise that its not as severe as other things but still not easy.wow that's good!I'm pleased to hear thatI missed out so much of school,I came out with nothing.being told I couldn't do what I wanted,lifting heavy things,not being able to walk far etc just restricted.difficult finding a job that doesn't judge you on perthes and no grades!!!!but I hope the research gets quicker for the future of sufferers

Hello.3 years has flown by and 5 weeks ago i had a total hip replacement.a week in hospital,3 weeks on a zimmer frame and now on crutches.as i have limped for so many years i have to learn to walk properley.hoping to get driving asap😊.

Wow, wow and more wows!!

Hello everyone and Hello “Gill49638”!

So when did you have your hip replacement? This year?

Good luck with the rehab. Keep at it

I had my total hip replacement in April 2016.

It has changed my life.  I can walk with my new hip for hours!

And no pain. None.

My recovery took time, but the integrity of the hip has never been in doubt.

Seamus

Hello seamusc 😊.yes my operation was nov 1st 2017.its 10 weeks tomorrow and 1 crutch,im looking forward to being able to walk with no pain😊.its lovely to hear you have no pain,we all should be good for 20 years😊.Gill.