There Is Still Hope For SLE Patients

By Sakini Mohd Said Like cancer that still has no remedy, the Systemic Lupus Erithematosus (SLE) disorder also has no remedy. But by managing the disease, those diagnosed with SLE could still lead a productive life. This last article looks into the life of a woman who has been living with SLE. KUALA LUMPUR, Feb 12 (Bernama) -- Mariani Zainol, 58, thought that the pain at her toes and knees was the normal symptom of the arthritis that she has been suffering. At the same time, she suffered from abnormal hair loss and her body felt extremely lethargic for prolonged periods. She was diagnosed with arthritis in 1992 and had been suffering from the complications related to the ailment. But the pain that she had to endure was getting worst by the day. The worsening pain made her ponder whether the symptoms were due to arthritis or something else more serious. Added with the lethargy that she could not overcome even after taking vitamins, she finally consulted a doctor to determine the real cause. "It confirmed that you are suffering from SLE and not arthritis...," said the doctor who treated her. She never imagined that the so called arthritic symptoms that she was suffering from was actually the symptoms of SLE. Mariani was at a loss as she had no idea of SLE then. FATED Recalling the moment she was confirmed suffering from SLE in 1998, Mariani said had never heard of the disorder prior to that though she had worked in a hospital environment. All that she knew was what the doctor told her that the SLE is a mysterious disorder that even the medical experts find it difficult to explain and no one was sure on the availability of a remedy for the problem. What is more frightening is that the disorder could ultimately cause death if it is not brought under control as it could attack the vital organs like the kidneys, brain, heart and lungs, and the blood vessels. SLE is a chronic 'auto-immune' disorder where the body's immune system attacks the body tissues instead of the antigens. "Though I felt daunted, I accepted it as a fated and as another test of Allah," she told to Bernama. HOSPITAL, MY SECOND HOME Nonetheless, the suffering she endured was worst than arthritis and she was regularly admitted to the ward. "The attacks are similar to arthritis only that they are more severe. Often, SLE attacks the knee joints making me feeble and I had great difficulty in getting up and walking. "There was once, I cried non-stop due to the excruciating pain. The attack would come and go anytime," she explained. The pain also causes lethargy for long durations and this is also why it is difficult to get up and move. And this affected her quality of life. She even could no longer wear high heels. "I don't know why since being diagnosed with SLE, I could no longer wear high heels. I feel unstable and the pain attacks from the sole up to the thighs with pulsating feel at the joints," she said. NOW A CONTRACTOR Though her quality of life has been affected and she had to let go many of the things she liked most, Mariani had not resigned to her fate. Being full with zest in life, she started seeing things from a positive angle and said to herself that there is nothing to stop her from continuing with her goals in life as long as she can control the disorder. Such positive outlook in life is vital as normally people with SLE will feel depressed especially with obvious symptoms like the inflammation of the skin that prevents them from leaving home. She was thankful that the SLE did not affect her skin as the symptoms vary in different people with Mariani's symptoms mostly being prolonged lethargy and the pain attacks similar to arthritis. In maintaining a healthy lifestyle, the doctors have advised her to take care of her health including avoiding excessive rays of the sun that could exacerbate the medical condition. However, Mariani made a surprise move when she left her job in 2002 to become a contractor doing outdoor work. "I have been a contractor for the last 12 years after opting early retirement and thank god so far I have had no lupus attack at the project sites. "Even the doctor was surprised that I opted for this field. As for me, there is nothing to fear as I could take precautionary measures like applying sun screen to the body, wear long sleeve blouses, carry an umbrella and keep up with the medication," she added. BE DISCLIPINED In enabling those with SLE to lead a good quality life, Mariani conformed with the doctor's advice. Keeping up with treatment regimes is important as SLE could reappear and if its not controlled it could attack the organs. Elaborating on this, Mariani said she had once stopped taking medication for two years after listening to friends. "At that time, my friends said why continue with the medications, it is dangerous as the medications contain chemicals. They asked me to try other medication, but when I stopped things became worst. Mariani now leads a happy life with her family and the SLE poses no hindrance in leading an active lifestyle. -- BERNAMA