Lupus: Incurable but Manageable
Paula Abdul, Toni Braxton, and Selena Gomez are some of the artists who have been diagnosed with lupus. All three of them educate their fans about lupus through their platforms. But what exactly is lupus? Why is this incurable?
Lupus is derived from the Latin word "lupus" (wolf). It was given this name because its distinctive rash resembles a wolf bite. The name was first used in 1200 BC.
The lupus community in Canada declared May 10th as World Lupus Day in 2004. The goal is to raise public awareness about lupus. Many people are still unaware of lupus information, which can have a negative impact on lupus patients and their families.
That same year, lupus organizations from around the world made lupus an international health priority, ensuring that lupus patients worldwide received effective diagnosis and treatment.
The disease of a thousand faces
Lupus is a chronic autoimmune disease that can affect any organ. The immune system is unable to distinguish between viruses, germs, or bacteria and healthy cells, tissues, or organs in this situation. As a result, the immune system targets and destroys healthy cells, tissues, and organs.
Anyone, regardless of race, gender, or age, can be affected by the disease. However, nearly 90% of lupus patients are productive-aged women aged 15 to 44. Lupus affects black and Latina women 1 to 3.5 times more frequently than white women.
Lupus is diagnosed using a series of tests, including blood and urine tests. A diagnosis is made based on signs and symptoms as well as physical findings.
According to the Lupus Foundation of America, the number of lupus patients in the United States grows by 1.5 million each year. There are at least five million cases worldwide. Each year, approximately 16 thousand new cases are reported.
The World Lupus Federation recently conducted a survey of 6,700 lupus patients from over 100 countries. According to the survey results, which were posted on their website in May 2020, 87% of respondents said the disease had affected one or more major organ systems.
Three-quarters of those polled reported that an average of three organs were affected. 60% of respondents felt the impact on their skin, 45% on their bones, 36% on their kidneys, 34% on their digestive system, 31% on their eyes, and 26% on their central nervous system.
Meanwhile, the Lupus Foundation of Indonesia has recorded 17,286 lupus patients in Indonesia to date. However, it is estimated that 1.5 million people have this disease. But, due to a lack of understanding and misunderstanding about lupus, only a few people report their condition.
What are the symptoms?
Lupus is a chronic disease. Symptoms and signs appear for six weeks or longer. It can, however, last for many years. Lupus symptoms are difficult to identify because they are similar to and overlap with those of other diseases. That is why lupus is known as the disease of a thousand faces.
Lupus symptoms vary from person to person. In general, people with lupus have a skin rash (butterfly rash) on their cheeks, fatigue, and long-term swelling and inflammation of their joints.
Lupus has two phases: remission and flare-up. Remission denotes a temporary cure. They only have minor symptoms. Meanwhile, the flare-up phase is when lupus symptoms reoccur.
Lupus is classified into two types: SLE (systemic lupus erythematosus) and CLE (cutaneous lupus erythematosus). The most common type is SLE lupus, which attacks multiple organs. Treatment for SLE lupus patients aims to prolong remission.
Meanwhile, lupus is a skin disease that can affect people with or without SLE. During an examination, the doctor will remove a small portion of the rash or sore. This disease is not contagious, but it can be dangerous and even fatal.
What about the treatment?
Lupus treatment is determined by its signs and symptoms. Patients may require treatment or a change in their medication regimen. When the symptoms of lupus improve, doctors may reconsider changing the medication or its dosage. Voclosporin has been shown in clinical trials to be effective in the treatment of lupus. Other potential lupus treatments under investigation include abatacept (Orencia) and anifrolumab.
Support for lupus patient
Selena revealed in a 2019 interview that lupus has changed and affected her life. Because of the disease, she suffered from anxiety, panic attacks, and depression. "I have to fight these feelings every day," she said.
Lupus patients' lives are difficult, both physically and emotionally. To overcome loneliness and isolation, they require assistance from a variety of sources.
Regrettably, expectations do not always come true. Their immediate circle, including close family members, may be unaware of their situation. They may have heard about the disease but have no idea how to motivate them to fight it.
As a result, they require a support group where they can feel heard and understood. There are numerous organizations concerned about lupus, including the World Lupus Federation, a global organization, and the Lupus Indonesia Foundation, a national organization in Indonesia.
These organizations not only assist people with lupus, but they also educate the general public about the disease.
Although lupus is incurable, treatment can help manage symptoms and prevent flare-ups. Treatment relieves symptoms, prevents relapse, and addresses other health issues. Each individual's treatment is determined by their symptoms and needs.
People with lupus are not alone, and they do not have to be. Getting involved in support groups, as well as discussing the patient's feelings with experts, family members, or friends, is critical.
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