It is still not known why ankylosing spondylitis, a chronic inflammatory disease, affects more men than women, writes Ciarán Brennan.
WHEN HUGH Cassidy was in his late 20s, he was a keen runner. But he increasingly found that pain in his lower back was becoming a problem.
"When I would get back from a run, I would be quite sore and have to take a bath to loosen up a bit," he says.
After a bad motorbike accident, the pain got progressively worse. Eventually, a doctor diagnosed that he was suffering from ankylosing spondylitis, a condition he probably had for years.
Ankylosing spondylitis is a chronic inflammatory disease, which principally affects the spine and the joints between the spine and the pelvis.
"It starts off with lower back pain and you get stiffness early in morning which improves as you move around," explains Cassidy, who is chairman of the Ankylosing Spondylitis Association of Ireland.
Figures for the prevalence of the ailment are hard to come by but it is reckoned that about 44,000 Irish people suffer from the painful rheumatic disease, particularly men aged 18-44.
"Why it affects men is very difficult to know," says John Church, chief executive of Arthritis Ireland. "Most forms of arthritis affect women. This one would be more male and there is increasing concern among the rheumatology community that it is actually higher than we thought and that is also the feeling in North America and Europe."
Delayed diagnosis is common because symptoms are often attributed to more common back problems and much of this is due to a lack of understanding of the disease, says Church.
"Like rheumatoid arthritis, it is an autoimmune disease, so your immune system thinks there is something foreign in the joints and starts to attack your joints," he says.
Ankylosing spondylitis causes inflammation of the vertebrae that can lead to severe, chronic pain and discomfort. In the most advanced cases - but not in all - this inflammation can lead to new bone formation on the spine, causing the spine to fuse in a fixed, immobile position, sometimes creating a forward-stooped posture.
"The difficulty is that a lot of GPs aren't aware of the disease, so they send people to physios and back pain clinics and chiropractors whereas in fact it is an autoimmune disease which needs proper treatment, part of which is the proper medication," says Church.
"It displays the typical symptoms of back problems that would tend to need anti-inflammatories, painkillers and physiotherapy. They will address some of the symptoms but the underlying cause is a lot more sinister than just muscular issues. You really need to get into the field of rheumatology.
"A consultant rheumatologist is the only person who can diagnose it properly. It is a complex disease which needs complex treatment in the same way as rheumatoid arthritis cannot be dismissed by complementary therapies or painkillers alone.
"You really need to have proper medication - high-tech, very expensive drugs which are available on the high-tech scheme. They can only be prescribed by a consultant rheumatologist."
Although it mainly affects the spine, it can also affect other joints, tendons and ligaments, says Cassidy.
Other areas, such as the eyes, lungs, bowel and heart, can also be involved, he explains.
"There are other criteria to diagnosing it. It is not just necessarily a problem of lower back pain," he says.
The causes of the disease are unknown but genetics play a key role. Medical research has shown that more than 90 per cent of people with ankylosing spondylitis all share the same genetic cell marker - Human Leucocyte Antigen B27 (HLA-B27).
"A lot of research at the moment is going into genetic inheritance," says Cassidy.
Drugs are only half the answer to managing the disease, according to Church. Appropriate exercise is crucial to managing ankylosing spondylitis.
"Drugs are an important part of it but is not the exclusive solution to it," he says.
So is increasing awareness and knowledge of the condition. John Hayes, the much-admired Munster and Ireland rugby player, helped to launch and is fronting the Get Your Back Up! public awareness campaign, developed for the Ankylosing Spondylitis Association of Ireland and supported by an educational grant from Wyeth Ireland.
The scheme aims to educate people on the symptoms and treatment of ankylosing spondylitis, and promote early diagnosis of the painful disease.
"We are aiming to educate both the patient and the healthcare professionals as well as to be able to recognise the condition as early as possible," says Cassidy.
'I knew I was young to have a version of arthritis'
When John Barnes was just 17, he noticed stiffness in his ankle and started having problems doing ordinary things such as getting in or out of a car and began feeling pain in the mornings.
"I didn't think anything of it for a while," he says. "I thought I might have injured myself without knowing it. When it persisted, I realised there was something wrong."
When he was 18 and not long out of school, he was diagnosed with ankylosing spondylitis.
"I knew I was young to have a version of arthritis," he says.
"I was upset obviously but I was probably quite philosophical about it. I was told it could be managed."
Now aged 40, Barnes has been living with the condition for half of his life and while philosophical about it, he says it hasn't always been easy.
"I've tried to become more proactive in managing the disease," he says.
"I haven't always been over the years - I haven't been doing my exercises or taking whatever medication I have been prescribed regularly. I'm much better at it now."
That has led to pain flaring up at times, particularly if he skipped his medicine or exercise programme or pushed himself too hard.
"I don't have that much pain if I'm not trying to do anything. If I try to run or exert myself in certain ways or stand for very long times, pain can set in then," he says.
The key to treating it is to heed the advice of healthcare professionals, he says. "I can't stress enough the importance of doing whatever your management programme says, whether it is exercise or types of medicine or both."