• AS is a persistent arthritic disease of unknown cause that strikes more men than women. (Getty Images)Source: Getty Images
Ankylosing Spondylitis is a form of arthritis impacting more young men than any other demographic in Australia. When it hits, it can gradually fuse your spine, leaving you hunched or in a wheelchair. The experts say there are good treatments available to manage the disease. But why then have most of us not heard about it?
By
Yasmin Noone

28 Jul 2016 - 9:15 AM  UPDATED 28 Jul 2016 - 9:42 AM

At 21 years old, Max Stoneman is busy crafting his future adult years to ensure he remains in good health a little more carefully than some of his peers. Stoneman currently has Ankylosing Spondylitis (AS), a very painful form of spinal arthritis prevalent in his legs, hips and neck. Most recently, he discovered that the autoimmune disease, which causes the calcification and fusion of the spine, has also just started in his back.

“I’ve seen AS progress through the other parts of my body since my symptoms started in 2009,” explains the Brisbane local.

“I understand that AS can get progressively worse and I may become wheelchair bound. But I’m a glass half full type of guy. I try and look at the positives.”

Stoneman was diagnosed with AS at age 18 after four years of secretly suffering from chronic and debilitating pain that felt like “lightning bolts running from my hips to my ankles, shocks that used to happen 24/7 for a couple of years”.

“I understand that AS can get progressively worse and I may become wheelchair bound. But I’m a glass half full type of guy. I try and look at the positives.”

“My family knew I was battling with pain but I didn’t tell them much more.

"At that time, I was using walking canes and using my hands to pull myself along the wall to walk from one place to another at home. Mum used to call me for dinner five minutes before everyone else because it took me ages to get around the house. But I still never admitted that I was that bad.

“That was until one night when my legs completely locked up and I couldn’t touch them or move a toe. The pain was pretty excruciating. I was put into the ambulance. But the ambulance drivers said they couldn’t do much for me but take me in to the hospital and just give me painkillers. I think it was hard for them to understand what was happening and imagine that someone my age could have arthritis.

“That night was the turning point for me. That’s when I knew something was not right and I decided to get it checked out further.”

Eventually Stoneman was referred to a rheumatologist who got him access to an AS clinic. And after years of suffering alone, the sports management university student now receives AS medication, via a monthly injection and works with specialists to do the low impact exercises needed to control the progression of the disease.

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If you've never heard of AS, you're not alone. Arthritis Australia estimates that around one-to-two per cent of the Australian population are living with AS. The disease is believed to be genetic but only one in every eight people who have the HLA-B27 gene will develop AS. The condition usually first appears between the ages of 15–40 years and is about three times more common in men than in women.

However, Sydney-based rheumatologist Dr Irwin Lim believes AS’s low prevalence rates mean few are aware of AS. This lack of community and medical awareness means that many people in need of treatment are denied from receiving a timely diagnosis.

“On average, there’s a nine-to-10 year delay in diagnosis across most countries,” says Dr Lim, director of BJC Health.

“That means there’s around a decade that passes from the time of onset of symptoms to the time of diagnosis.

“So even though we know the disease often affects young people, if a young male presents to a clinician with back pain they’re often told it is ‘because of your work or you play too much sport’. If it’s a young female who is presenting they are told their back pain is because ‘you are overweight and your core stability is poor or you’ve just had a baby’.

“Basically, there’s always another reason for a clinician to not diagnose it.”

Dr Lim wants this to change. Rather than let people suffer in pain without support, he seeks greater community awareness about AS so health professionals can pick it up in a timely manner. Although there is no cure for AS, he says there are very effective government-funded treatments available.

“There are treatment options around now that might not have been around a decade ago. That’s why receiving a timely diagnosis is so important.”

“Basically, there’s always another reason for a clinician to not diagnose it.”

He advises that anyone experiencing chronic back pain over a long period of time should initially consult their doctor, a physiotherapist or a rheumatologist.

“But, if your GP or allied health professional dismisses your symptoms, maybe over time you will recognise it yourself and push for a diagnosis and treatment.

“Having knowledge is powerful as it reduces the frustration you feel after not knowing what’s wrong with you.

“Receiving a diagnosis means you take control back over a disease.”

Visit Arthritis Australia for more information on Ankylosing Spondylitis.

To identify if you may have AS or other arthritis symptoms, complete a symptom screener available at 'Don't Turn Your Back On It'.

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