Zaimamaria Ab Rahman was an active individual who enjoyed jogging and cycling before being diagnosed with SLE in 2013. To her, losing the ability to exercise deprived her of a source of joy.
“I have actually been diagnosed with mixed connective tissue disease – a rare autoimmune disorder – with the primary symptoms being SLE affecting the joints,” she told Bernama recently.
Refusing to let her illness stop her from staying active, Zaimamaria persists with light exercises such as brisk walking and cycling, depending on her ability on any given day.
The 42-year-old said she once put on 10kg owing to steroid intake after being diagnosed. Wanting to maintain her ideal weight of 55kg, the former private-sector employee attempted strenuous activity such as hiking and running.
“But my plans went wrong because after several tries, I began to feel uncomfortable – I almost fainted and experienced breathing difficulties. So, not wanting to take any risks, I had to stop.”
Thankfully, Zaimamaria no longer needs to take steroids and is now able to maintain her weight, proving that SLE does not mean the end of an active lifestyle.
Understanding SLE
According to Dr Syahrul Sazliyana Shaharir – rheumatology specialist at Hospital Canselor Tuanku Muhriz, Universiti Kebangsaan Malaysia – Malaysians began to know more about SLE following a 2005 incident where a teenage girl came down with a mystery illness while participating in national training.
She was found to have severe rashes on her face and, after being referred to a specialist, was diagnosed with SLE.
Syahrul explained that SLE, a long-term condition, stems from the production of autoantibodies that mistakenly attack the body’s own tissues.
This causes abnormal inflammatory responses and damage to the function of certain tissues and organs such as the skin, heart, joints, kidneys, lungs and/or nervous system.
“Patients need to undergo certain tests to find the cause of the disease. However, there are several known triggers, including excessive sun exposure, genetic factors, viral infections, and hormonal imbalances during puberty,” she told Bernama.
She said 90% of those affected are women, especially those aged 15-45. “There is currently no cure, but there are medications that can help manage signs and symptoms such as inflammation.”
Patients are advised to adopt a healthy lifestyle, including a balanced diet, so they can lead a normal life, but they need to factor in their stamina and ability.
“What’s important is for patients to discuss and seek advice from their doctors and undergo physiotherapy to assess their strength and stamina,” Syahrul added.
According to her, SLE can sometimes be inactive or in remission, although it has been known to become active again (relapse) thereafter. “If active cells are not controlled, it can be fatal,” she cautioned.
“While the disease is active, we do not encourage patients to engage in strenuous activities such as hiking. But when SLE is inactive, patients can gradually carry out physical activity without overexerting themselves,” Syahrul concluded.