Lupus can kill you without letting you know, beware!
By Arpana Adhikari
Kathmandu, May 12: In the recent years, the country has witnessed increasing number of people suffering from lupus, a rare life-threatening auto immune disease. However, there is a little knowledge on lupus, not only among general population but also among those from the medical fraternity.
As this life-threatening disease shows different symptoms in different patients, medical professionals are often unable to identify the disease based on its symptoms.
In Nepal, the disease remains widely underdiagnosed in early stage because the patients have multi organ involvement and they seek consultation from the respective specialists depending upon the organ they are having problem with, said Dr. Archan Shumsher Rana, nephrologist at MARK International Kidney Center at Nepal National Hospital, Kalanki.
Owing to this reason, the disease poses a greater risk of being life-threatening, damaging different organs such as kidney, heart, brain and lungs. But the kidneys are the most commonly affected organ, Dr. Rana added.
Monika Shrestha of Chitwan was just 18 when she had a first symptom of lupus.
Sharing her horrific experience, Shrestha said she woke up one morning with high fever and severe joint pain. “I was perfectly fine in the earlier night and on the next morning; I had so much pain in hands and leg-joints. The pain was so intense that I couldn’t perform my daily, routine works.”
“As my mother has arthritis, I visited one of the senior orthopedic doctors thinking that I have inherited arthritis from her. The doctor prescribed painkillers and ointment to ease my discomfort. But the pain in my joints did not recede.”
Then again she visited a senior physician. The doctor suggested her to get admitted at the hospital, with an assurance to cure her disease. But once the doctor started medicines, she got rashes all over her body.
Following the rashes, she again visited a dermatologist. She went through all tests and screening, but doctor just analysed that the rashes were caused by the drug allergy. He again prescribed her paracetamol and painkiller but nothing worked.
“Within one year I visited multiple doctors seeking treatment for multiple health issues. Since then I had already developed other symptoms like, hair loss, joint pain, mouth ulcer, and fatigue among other.” One day her mother read about the camp conducted by Alka Hospital to screen lupus. Then she visited Kathamandu and finally her disease was diagnosed. At the time, the disease had already affected her kidney.
Since four years, she has been taking medicines to suppress ailments and lead a normal life.
Shristi Joshi, has similar story to share. Joshi herself a psychologist shared that she woke up one morning with pain in her elbow.
She waited for few days thinking that the pain will go away. But pain became intense and she decided to visit a doctor.
Joshi said, “After running a couple of tests which showed no problems, I was sent home with painkillers. I was down with a fever every time I stepped out. I became bed-ridden.”
She shared that she consulted several doctors in Nepal but none of them were able to diagnose her disease. “In 2010, I was diagnosed with lupus in Delhi. Since then it has been a never-ending battle.”
She has also developed Raynaud’s phenomenon, a vascular disease and Sjogren’s syndrome. “The medicines have taken a toll on her. lupus has affected my brain, nervous and digestion system, she added.
People suffering from the disease were found receiving treatment for their individual symptoms, without knowing the root cause of the disease, said Dr. Rana.
Dr. Rana, who is also expanding the lupus Society of Nepal into a team of medical doctors and patients, said to detect and treat the lupus, there should be a team of different medical experts like rheumatologist, nephrologist, dermatologist, pulmonologist and neurologist.
lupus is a chronic autoimmune disease in which the immune system attacks healthy cells, tissues and organs. The symptoms and affected organs differ from person to person, said Dr. Rana.
He said there is a list of various symptoms that doctors use to guide lupus diagnosis, including butterfly-shaped rash over cheeks, oval or round rash, rash appears in skin when exposed to the sun, oral ulcer, arthritis, lung or heart inflammation, blood or protein in urine, neurological disorder, abnormal blood result, immunological disorder and Antinuclear Antibodies.
Dr. Rana suggested that a person with two or more of these symptoms should consult doctors. The patients have to get several bloods, urine and other tests to identify the disease.
“The disease cannot be cured but the patients with lupus can be given hydroxychloroquine (HCQ), steroids and immune suppressant drugs to suppress the health problems caused by the disease.”
“According to him, lupus could be a never-ending source of discomfort and health issues, but with appropriate treatment, frequent clinical follow-up, changing lifestyle and adopting healthy diet, majority of the people with lupus would have a normal life expectancy.
It is estimated that more than five million people worldwide have lupus. The disease affects 1 in every 1,000 people making it a rare disease that predominately affects women. Nine out of 10 lupus patients are women in their reproductive age of 15-45 years.
According to the experts, it is hard to say what causes lupus, but the reasons could be linked to genes, environment and hormones.
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