Life at 30 with Perthes hanging around me.

Bones, joints and muscles
1

Hello, I am just writing to see if anyone has some advice or to share their experience of the ailment. I dont remember everything, but this is what I do remember... I was in hospital in traction for three months, had extensive physio, and remember lots of out patient hospital visits. I guess I was around 5 when it all happened, I spent Christmas in hospital, but to the credit of my parents, they helped make it easier. I remember having a limp and lots of x-rays. I have not had any pain since I was young and I recently talked to my dad, he said that when the pain becomes persistent and dull in feeling, I should go to my GP. Luckily I am ok right now but I am more and more thinking about the future and what changes are going to happen. I am 30 and 9 months old, my dad said that around 30 would be the time the perthes again would start causing problems. As soon as the perthes was found, my days of sports, came to an abrupt halt, I kept doing light sports but my passion was in contact sports (Football, Rugby). Now I am a keen golfer, Handicap 18, and I am starting to learn & qualify myself as a golf coach. My dilema now is, what impact the golf has on my hip? Will it speed up the process? Should I just live life and worry about the perthes when it bothers me again?

I hope it doesnt sound trivial, I kept sports to a minimum worrying about the perthes, until three years ago, when golf became a passion for me. I just dont want to get full steam ahead and then pay the price later.

Any feedback or experience would be appreciated. Thanks.

2

Hi Mr Weir

I am a woman that will be 32 in May and I have lived with Pertes' since I was 3.

Luckly enough for me I have persistant parents that pushed for answers. The 1st hospital- which was in Bedfordshire wanted to put me into traction until I was 16 i.e a wheelchair. My parents were not happy with this and they pushed for a 2nd opinion. That resulted in a Left Hip Rotational Osteplasty at a hospital in Buckinghamshire. Perthes' comes in varing degree's and stages and mine was quite advanced.

I was born in 1976 and my 1st op was the pin and plate in- a Left Hip Rotational Osteplasty in 1980. In 1981 I had the pin and plate taken out.

I never had any problems with growing up other than I was different in the sence I had a large scar on my hip and that I couldn't sit on the floor for long periods (getting up is a laugh! the puddle duck is back :-).

I had to have the scar restiched in 1992 because I kept splitting it - the desks at school were just the right height and rough enought to open it a little (don't worry only about 10mm max).

I participated in all sports other than cross country- I didn't want to be left out. I was rather good at hockey I remember and rounders. I didn't suffer pain through my teenage years as such just the odd day of walking with a limp.

To explain further how active in sports I was and am:

I have swam for my country (aged 12) and at the time the leading swimming club in the uk. I have been dingy sailing and windsurfing from the age of 8 and I took up waterskiing when I was 12.

My belief is that if I am going to end up in a wheelchair one day I want to look back and say I have done that.

In my adult years I have even gotten my Motorcycle Leicence!

From what you have written I feel that you have had barriers put on your life of what you are allowing or not allowing yourself to participate in. Why may I ask?

Just becuase you have this problem doesn't mean life is going to stop. You need to at least try it for a while- I promise you your hip will soon tell you yes or no.

I found that out when I had been dancing Salsa for 18 months- my hip was hurting more and more and when it was investigated I had another operation in 20004 to re-build the socket. I had a 50% hip coverage and the doctors couldn't believe I was walking. Oh and just so you know- dancing didn't damage my hip. If it's going to go it will. What you do or don't do will not change that fact.

I have back problems now to add to it which are now being investigated but it's not stopping me!

It seems you might have been a little luckier than me because yours hasn't flared up again. Mine did.

Please Sir don't let this Disease stop you living your life- live it to the full with no regrets- I have and I'm happier by trying things out and if I can't do it at least I have tried!

Also if you haven't had any problems with the hip since a child it could be quite probable you won't- have you thought of that?

Any how I'm sorry if I have sounded like I have been preaching to you but please live your life to the max - preventative measures can be boring and leave you on the side lines missing all the fun. GET STUCK IN!

I wish you well sir in the future,

Take care

Hazel x

3

Hi, a bit late in the chain, but I googled playing sports with perthes and up came this discussion. I have had perthes since three. I was put into plaster casts for two years from my hip down to my ankles with a bar across the middle to keep my hip in place. As soon as my muscles grew back I have always played football, golf, kept fit by running and at 28 ran a 10k in 52 mins. I love running and although I can safely say with or without perthes my football days are behind me, running has been a good way for me to forget everything and always better my time etc. I'm now 29, 30 next month and in the last five months I've had severe pain in my hip, enough to wake me up at night. So, I've been to the consultant and today just had my first MRI scan on my hip to see what's going on (really freaked me out!!). I've been advised by the consultant to immediately stop any high impact sport and especially to never ever run again. This hurts, but then again I've got away with it for so long, I'm going to have to re-adjust my thinking. Cycling and swimming for me. I got married only two months back and our thoughts are on kids, my bug bear (if I am lucky enough to have kids) however is that I may not get to play football with my son or daughter or go running with them, which is making me feel a little defeated at the moment. For now I have very little idea of what is in store in my future as far as mobility is concerned, but these questions I will be putting to the consultant and will be happy to update you on the progress. All in all I should remain happy looking back, I lead a relatively "normal" childhood, this totally being down to my parents. Happy to discuss further and share any other thoughts etc. Phil

4

Hi I'm 39, got diagnosed LHP about age 4. Spent 2 yrs in brace on crutches. Never got into sprots but was always active. I think I avoided sports as when I came off crutches I was well behind onther kids. Howeever Ive alweays been active - walking a lot, working hard in active jobs etc. Howver in my late 30's Ive started biking and running. I did have a period with some hip pain but went to my doctor and had a check up. I thought it was early srthritis but he said I was still ok. I cahanged my diet a bit - google anti imfammatory diet - and the pain eased. I'm now running 10 k comfortably and I could never do this before. Biking is still my thing though. I do worry running is too hard on my left hip but I am trying to run with good form and use running as my back up training for when the trails are bad or my bike is in for repair.  Hope this helps, I like running and am hoping to run a bit more. I think the secret is to cross train and ensure you are using and exercising all your muscles. 

Interestingly my most problem area has been my left knee as when using hte bike pedals my left leg is shorter than my right and is over stretched. Knee strengthening exercises have helped hugely ans all I ahve had to do is exercise my left knee when brushing my teeth to strenthen the muscels nad create more support. My bike - saddle height - daddle angle - pedal cleat postiion has also needed attention and careful setup.

5

Hi, I am 30 and was 5 when i found out i had the condition. I have had no intervention from the doctors except for having pysio and shoe raisers as a kid. I can remember the day we went to the doctors (must have been eary teen) and them sayin "Sorry there is nothing else we can do". For myself this was shattering, years later nothing has improve, lived with lifes challenges with the disease and do what i know i can do. I don't like running in front of people because i know i dont run 'Properly' by limping. We try not to let this desease effect us but its hard, confidence and pepole staring is hard to just brush under the carpet.

​I Over the coming years i have been pretty much pain free but living with the effects of mobility and shorter leg. Last year my hip has been causing me pain, i can only walk about 10 min and it will start to hurt, everyday activities become a struggle, putting shoes on, sleeping in pain, getting off the couch. I am now booked i to go in for a total hip replacement in 4 wks time. I can't wait, it's something i have been waiting for- for so long. I am excited to see what this ne hip brings, looking to see what people take for granted- something that people like us wish for.