If you or your family have a story to tell, please contact me and I can either place a link to it on this site, or place a brief history here.  My aim is to have a variety of stories here, illustrating varying therapy and treatment options for Perthes, so that people can see what decisions were made, why they were made and also how the child or adult is doing now.

PLEASE FOLLOW THESE LINKS TO:~

Both of my children have/had Perthes and to see what has happened with them, what decisions were made and why, please follow the link to 'Brown Family Diary'.

Hands for Hunter - site set up to raise awareness and fundraise for Hunter Sanchez and his family from the USA, who has recently had his bilateral external fixators removed, after having them for approximately 4 months  as part of his treatment for Perthes.

Lauren had  a shelf arthroplasty and tendon release nearly 4 years ago.  She has since come along very well and at her last check up in October, it was revealed that she had lost only 20 degress of external rotation, with no LLD (leg length discrepancy) to date.  She continues with annual check ups due to some Coxa Magna and to keep an eye on her leg length, but so far so good! 

Please go to our message board for more stories of Perthes journeys.  There are ones from people currently with a child going through the journey and one's who have completed their journeys  - each one as unique as the child who had it. 

If you are interested, this is my story:~

DONNA'S STORY

I was diagnosed with uni-lateral Perthes at 4 1/2 years old.  My parents had previously been taking me to a chiropractor, as I had pain behind my right knee and was limping.  He told them I had a tilted pelvis, but as he wasn't making any difference with his treatments, they took me to the family doctor. 

This was approx 1968 and doctors didn't explain what was happening and why they made the decisions they did.  I was admitted to Hutt Hospital for three months of traction.  In those days, this consisted of sticky tape wrapped around your legs from thigh to foot and a heavy weight hung off the end of the bed to ease the hip joint apart.  Weekly, the nurses would remove the tape and replace it, straight onto the raw flesh.  My mum told me she witnessed this only once in the three months I was in hospital and I apparently screamed through the whole procedure. 

There was no physio and no relief from the traction at all.  Toileting was done on the bed in a pan, washing was a sponge bath done by a nurse who had better things to do.  Parents were only allowed to visit between certain hours of the day and for my mum that was a nightmare, as she had my younger sister to look after too and had to get her to our great-grandmothers house, then catch two buses to get to the hospital, so I only saw her a couple of times a week. 

When I was finally released from hospital (not long after my 5th birthday), I was fitted with a calliper (brace).  This consisted of two metal bars - one ran down the outside of my leg and the other down the inside.  There was a large leather cuff arrangement at the top of the calliper that sat around groin level and another one around knee level, both of which had to be tightly laced up.  A shoe was attached into the frame with a leather strap tethering it to the bottom, so I wasn't weightbearing.  On my left foot, I had the matching shoe, but this one had a bridge-type arrangement under it, so that my pelvis was kept level.  I wore this for over a year.

After that was removed, the only physiotherapy I received was being made by my parents to walk up and down the narrow hall in our house.  I must have said "I can't" a lot - I was after all only 6 years old - and my resounding memory of that is my father constantly saying "There is no such word as CAN'T!"

No real problems from then on.  I wasn't an athletic child, more happy to curl up with a good book than anything.  My hip would occasionally lock up or give out under me, but otherwise I got on with growing up, getting married and having a family. 

One thing I will say about a Perthes diagnosis today compared to when I was diagnosed, is that you can ask your doctor questions and the choices that are available are more varied, with the parents able to be with their children the entire time they are hospitalised, which I have always taken advantage of.  My daughter has had prolonged periods in hospital for the surgeries and I know that when she is an adult, she will remember that I was with her virtually all the time, unlike me whose memories are filled with prolonged absences and missing my parents so much, but that was the way it was then and we have a choice now!

I'm now 44 years old.  Approximately 18 months ago, I went to an orthopaedic surgeon, as my hip was progressively getting worse.  My femoral head is mushroom-shaped, the femoral neck is shortened and widened from Perthes (hence why I refuse to accept Perthes as a childhood condition, as the damage it wreaks is permanent!).  I am to have a hip replacement in the next 12-18 months apparently, although I am researching hip resurfacing procedures 'just in case' my hip isn't really as bad as it looks on the x-rays!! 

UPDATE 19th January 2008 : ~

Went to see the surgeon just before xmas and had new xrays done.  He compared these to the previous xrays and put me straight on the waiting list for the replacement (no choice about that).  He feels that my name could come up in about 6 months for the surgery, but to try and push it out time-wise if I can, which suits me.  The big issue is actually getting on the waiting list.

I will apparently be in hospital for 5-7 days, then pretty well out of action for 6 weeks, with approx 3 months in total for recovery (give or take) depending on how well I heal.  So, on with the weightloss and swimming, so that I am bearing less weight through the joint and my muscles are stronger, which should all help with recovery.