Alex’s annual bone density scan – what is this and why is it important?

Each year, Alex attends an annual Bone Density scan (also known as DEXA for short) to check his bone health. Alex has Duchenne Muscular Dystrophy, and for someone who has been taking steriods since he was 4 years old, looking after his bone health is very important. Steriods are a great way to help boys living with Duchenne stay on their feet for longer. But, steriods also come with a number of negative side-effects including weakening your bone strength. In turn, this makes it easier for boys like Alex to break a bone – one because he falls over a lot due to the muscle weakness in his limbs and hips and two because of the effects of the steriods he takes.

What is a DEXA scan?

A bone density scan uses low dose X-rays to see how dense (or strong) your bones are.

Bone density scans are often used to diagnose or assess your risk of osteoporosis, a health condition that weakens bones and makes them more likely to break.

As well as being quick and painless, a bone density scan is more effective than normal X-rays in identifying low bone density.

Why is having an annual DEXA is important to boys living with Duchenne?

In Alex’s case, he’s been taking steriods since he was 4 years old, shortly after he was diagnosed with Duchenne. Steriods are the mainstay treatment for boys living with Duchenne. Luckily, over recent years charities like Alex’s Wish has invested in new clinical research looking into alternative steriods called Vamorolone. Drugs that will have the same benefits as steriods, but without the nasty side effects. These are not yet available in the UK, although this has now been submitted to NICE for approval and we hope this new drug will become available to everyone living with Duchenne soon.

Back in 2015, when Alex was just 9 years old, he broke his hip playing cricket. Whilst we cannot say for sure, this is likely due to a number of reasons including his muscle weakness (he stood on the cricket ball and did the splits, but as the muscles in his hips wasn’t strong enough so the spits went too far and he heard a crack) as well as being on daily steriods. That crack was his hip breaking.

Another complication with boys living with Duchenne, is that if they break a bone – they cannot be treated in the same way as other children. If we were to put him in plaster, his muscle weakness would be so great that it would be incredibly unlikely he would regain strength to be able to walk again. So instead, he had to be operated on immediately and was given an internal fixation to stabilise the break. He then had to get up on his feet using crutches to keep him as mobile as possible whilst the hip healed. Remarkably, he was up on his feet walking again within 6 weeks.

So back to the question, a DEXA scan is a great tool to find out how strong children’s bones are and whether any early interaction is required. Since steriods also delay puberty in boys, Alex was given testosterone to help move things on a few years back during lock down. Testosterone increases bone density/strength and lessen the risk of fractures. This has helped Alex to improve his bone strength. In addition, Alex was also given 6-monthly calcium infusions (also known as zoledronic acid bisphosphonate) for a few years to further help improve his bone health. Alex also takes a daily supplement of high strength vitamin D.

By having a regular DEXA scan, we can continue to monitor Alex’s bone health and ensure we take action to help prevent future fractures. We are pleased to say that since his hip break, he hasn’t gone on to break anything else🙏. Alex attended his latest bone density scan in January 2023, and we hope it reveals continued good bone health. This is one way that we can proactively manage the condition, and to help with intervening treatments to help them live the best life they can.

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