By: Emma Russell

New research hopes to prevent hundreds of children living with Perthes disease from suffering chronic pain.

Every year around 50 Kiwi kids are diagnosed with Perthes, a condition where insufficient blood supply causes cells in the hip joint to die, damaging movement and causing crippling pain.

University student Caiti Brown was diagnosed with Perthes when she was five years old and is now looking at a hip replacement at the age of 22.

This research is sadly too late for Brown but she said it would be life-changing for the future generation of children living with Perthes.

“It would mean that if I have children and they get the disease they wouldn’t have to feel the pain I do every day and they wouldn’t have to rely on high-dose painkillers.”

For the last two and half years, University of Otago Christchurch-based orthopaedic surgeon Dr David Kieser has been working on a treatment that would prevent the progression of Perthes.

Kieser said it would not cure the disease but it could work as a preventative measure for children in the initial stages by stopping the collapse of the femoral head – the highest part of the thigh bone.

“You only have to see one young child with great ambition who then subsequently at the age of 16 has already undergone several operations and now needs their first hip replacement, that’s enough to drive you to help people,” said Kieser.

The treatment has been tested on piglets as a pre-trial model and Kieser’s team hopes to launch a clinical trial some time next year.

Kieser said children can get an injection in the hip when they are first diagnosed to open up the blood supply and stop the disease from progressing.

Unfortunately Brown doesn’t have that option.

After nine invasive surgeries, two full body casts and one leg cast, her condition has progressed into arthritis. All the cartilage in her left hip has gone, leaving bone on bone.

“It’s sore when I wake up and it’s sore when I go to sleep, so I don’t really get a break from it,” said Brown.

As her condition is severe, Brown is now looking at getting a hip replacement, which would give her movement back and alleviate some pain, but it is a high-risk procedure.

Kieser said it is an operation they tried to avoid in young people as eventually the hip wears out and another replacement is needed.

The more the hip has to be replaced, the poorer the outcome.

Despite it all, Brown doesn’t let her condition dictate her life. In fact, she said Perthes’ has made her who she is today.

The Victoria University student is studying biomedical science and psychology. She hopes one day to get stuck into research like Kieser’s, with the intention of making a difference in young peoples’ lives.

On September 28 it’s Cure Kids Red Nose Day and funds will be raised for vital child health research such as Kiesers’.

Source: NZ Herald

1 COMMENT

  1. Hello! I have Perthes Disease and suffer chronic pain every day too. Only it came on at age four and with a brace, special shoe, and pills I grew out of it (Doctor Jargon) until I was 37ish. It took Doctors 2.5 years of testing, MRI’s, and getting new doctors for them to realize why my hip was in pain all the time. At first my Dr. thought it was a strain. So it took time to get to the answer. I needed a Hip replacement then, but the specialist stated I needed to lose about 50 lbs first and because I was in pain good luck with that. Really bad bedside manner. I lost 40-45 of the 50 lbs (Taking me 1.5 years) and then my physician told me I had to lose 40 more. I went on a spiraling suck fest of depression and chronic pain causing me to self medicate with what I could (a lot of times alcohol- avoid it if you can makes you gain weight). Its been almost ten years now and I still have not had a hip replacement. Weight compounds the pain and it has more than affected my day to day. I completely understand how debilitating this disease is. Recently I went for Physical Therapy and my range of motion is at a 9/100. I recently contacted Michigan Ortho desperately seeking help with this problem. This is not a good story… Yet.
    If I could throw in a suggestion to anyone suffering this disease it will be that although you have to rest the hip and not over do it, you also need to try to stretch, stay limber, and work through the pain. Regular exercise, and stretching will help so much. My Regular Physician still seems to think she is treating a sports injury and tells me to take it easy and is always trying to reduce my pain meds. Because of thinking I tore the cartilage or hurt something in there I was told take it easy for almost 3 years and lost a whole lot of mobility and muscle. It hurts to sit, stand, walk, no way I can run, and even lay down some nights. Every movement and pivot of the hip feels like friction. Taking frequent breaks helps a great deal. Not a whole lot of Doctors know what to do or how to help with Perthes. And that Physical Therapist had no idea how to help me either.

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