Living in pain
Ankylosing spondylitis is a debilitating disease with no cure.
AT 33 years of age, Fong Chein Wai was riding high. He was super fit, taking part in body-building tournaments and carving a name for himself as a sports injury therapist.
Then, one day, he noticed the appearance of red, inflamed patches on his thighs. It must be an allergy, he thought, brushing it aside, convinced that it would eventually disappear on its own.
When the plaques of red skin started to itch and hurt, he decided to see a doctor, who diagnosed his condition as psoriasis.
Fong was given a cream to apply and went about his usual business.
The cream worked for a while, but within a few months, he started to experience pain in his finger and arm joints.
As the pain intensified to other joints, he went seeking for a remedy from one hospital to another, but no one could give him a proper diagnosis as the x-rays showed nothing. That was in 2004. “By 2007, I could hardly walk. I had already quit my job because I was ashamed to face the world with my skin condition. Finally, I was told I had spondyloarthritis, and there was no cure.
“More specifically, it was ankylosing spondylitis (AS),” recalls Fong, 45, a former SEA Games karate bronze medallist.
Spondyloarthritis is an umbrella term for inflammatory diseases that involve both the joints and the entheses (the sites where the ligaments and tendons attach to the bones). The most common of these diseases is AS.
In the most advanced cases, 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-stooping posture. This fusing destroys the function of the joints and results in disability.
It is not known what causes the condition, but research reveals a link with a particular gene known as HLA-B27.
Fong sank into depression. Breathing was laborious and sleeping was a nightmare because his joints hurt so badly, even with painkillers.
He shares, “I had to rely on my 70-something-year-old parents to help me as my siblings have their own families.
“Everyone was shocked to see how much weight I had lost and how weak I had become, especially since I was the fittest around. I couldn’t even open a bottle of water. I lost all confidence and didn’t want to see anyone.”
Fong weighed a feathery 32kg before he commenced treatment with biologic response modifiers, also known simply as biologics, to reduce the pain and lessen his symptoms.
Biologics are genetically-engineered proteins derived from human genes, and are designed to inhibit specific components of the immune system that play pivotal roles in fuelling inflammation.
The lifetime treatment is expensive and costs around RM45,000 annually.
Slowly, Fong’s pain diminished and he regained his appetite.
“The biologics, along with physiotherapy, provided much relief. At least, I can get a good night’s sleep.
“Now, I take it one day at a time. Life is short. I worry who will take care of me when my mother is no longer here,” says Fong pensively.
He is scheduled to go for a hip replacement surgery soon.
Like Fong, the disease has also ravaged Azamay Abdul Rahim’s body.
The former Proton employee had cracked his thoracic vertebrae when he fell off a motorbike nearly two decades ago. Azamay, 50, took painkillers for a year before it completely healed.
Afterwards, he found the love of his life, Ramlah Md Isa, and tied the knot. He was in her hometown of Port Dickson, lifting a bag of fertilisers when he felt a sharp pain in the same spot.
Azamay says, “The doctor said the bone had cracked again and forbade me from doing hard work.
“I started driving a taxi, but over the years, I became more and more hunched until I couldn’t walk. I opted for traditional treatment, but it didn’t work. We went back to the hospital and I was told I had AS.” His world crumbled. Ramlah had to look after him and their eldest son had to quit studying to help out with finances.
“I couldn’t even go to the toilet by myself,” recalls Azamay, who was confined to a wheelchair. “I was really like a baby – a stressedout baby.”
Ramlah would cry everyday, wondering why their life had taken a drastic turn. But she had to be strong for her husband and younger child.
With biologics, Azamay’s condition improved, and now, Ramlah says she can’t stop him pottering around the house!
“Before, he would think five times before entering the lift to go down from our apartment. We almost sold our house because he struggled to go up and down. But now, you can hardly find him in the house! He is able to walk with an elbow crutch and is pretty independent,” offers Ramlah.
Azamay says, “I’m able to smile again because I mati hidup semula! Ramlah has really been my rock.”
According to consultant physician and rheumatologist Dr Ramani Arumugam, AS can be debilitating and tends to strike people at the peak of their life.
Often, it begins with back pain. As almost 80% of people have back pain at some point, it usually isn’t investigated extensively, and conservative therapy is commonly prescribed.
“As the disease progresses, the spine becomes more inflamed and patients may experience marked stiffness of the spine, which may lead to inflexibility of the joints, to a totally fused spine.
“AS is difficult to diagnose and often takes eight to 10 years from the time a patient first experiences symptoms to the time the patient is accurately diagnosed. By then, the condition has caused permanent physical damage to the patient.
“Magnetic resonance imaging (MRI) can help in early diagnosis when the inflammatory changes to the spine are not visible on x-rays.
“With early diagnosis comes early treatment, and prevention of disability.
“No one knows how it comes about and there is no way of preventing it. We can only slow it down. The degree of improvement for each patient is different. Even if you are bedridden or crippled, we can still treat it,” she says.
Patients may also be burdened by other extra-articular manifestations, such as inflammation of the eye, which causes a red and burning sensation known as uveitis, psoriasis and inflammatory bowel diseases.
While there is no data in Malaysia on the prevalence of the disease, Dr Ramani says the awareness is increasing as she is getting more referrals. Two years ago, she had only four patients with AS, but now she has 21.
“Surprisingly, none of them have a family history of the disease, though some patients may have had an injury that sparked it off.”
Medications are usually prescribed to reduce inflammation and/or suppress immunity to stop progression of the disease. AS medications include non-steroidal anti-inflammatory drugs (NSAIDs), biologics and physiotherapy.
Dr Ramani advises, “The right posture is important. Think tall all day. This will help in correcting your posture and make you feel better about yourself. It is also vital to stay active with exercises such as swimming, yoga and walking, to strengthen your lung and heart.
“Applying heat packs to stiff joints can help to reduce pain and soreness, while applying cold to inflamed areas can help to reduce swelling.”
The World Health Organization confirms lower back pain to be one of the most common health problems worldwide. It is important to take this condition seriously because when back pain lasts for more than three months, it could be a sign of something else going on.