Make Lupus Visible

At least five million people worldwide, have a form of lupus. Lupus affects mostly women of childbearing age. However, men, children, and teenagers develop lupus, too. Lupus is a complex and debilitating autoimmune disease. Lupus is two to three times more prevalent among African American, Hispanic/Latina, Asian American, Native American, Alaska Native, Native Hawaiian and other Pacific Islander women than among White women. Disturbingly, Jamaica has one of the highest rates of lupus worldwide, with thousands of Jamaicans affected by this serious and lifelong, and in some cases life-threatening, autoimmune disease, typically without warning at the peak of their productive lives. Lupus continues to be one of those medical conditions shrouded in mystery. Yet, millions of people globally are impacted and affected by lupus. The treatment for lupus is also very expensive even with health insurance. World Lupus Day is an important annual observance held on May 10. This year’s theme, “Make Lupus Visible,” emphasizes the crucial need to raise awareness and visibility of lupus on a global scale. It calls for increased recognition of the challenges faced by those living with lupus and the urgent need for broader understanding and support. The day is set aside to raise awareness about lupus and show support for those who are living with it as well as lessen the stigma and misconceptions associated with the disease. In fact, May is Lupus Awareness Month. Lupus is a condition that causes inflammation throughout your body. You may experience symptoms throughout your body depending on where your autoimmune system damages tissue, including in your: skin, blood, joints, kidneys, brain, heart and lungs. Early lupus symptoms. According to the Online Source, WedMD, the symptoms of lupus vary from one person to another. Some people have just a few symptoms, while others have many. Lupus can affect any part of your body. Common symptoms include: A butterfly-shaped rash across your cheeks and nose (malar rash), which may appear dark purple or dark brown on dark skin but red or pink on light skin, sensitivity to the sun or other lights. Achy joints (arthralgia). Pale or purple fingers or toes when you are cold or stressed Types of Lupus. Systemic lupus erythematosus (SLE) This is the most common form of lupus, where a faulty immune system inflames several organs or organ systems. About 70% of people with lupus have this form of the disease. Lupus nephritis. This is inflammation of the kidneys due to SLE. If the damage is severe, you could need dialysis or a kidney transplant. Cutaneous lupus. With this, your faulty immune response causes skin rashes or lesions. There are three types of cutaneous lupus: The chronic, long-term type can cause permanent scarring. The subacute type displays red circular sores or scaly patches with defined edges. This rash can appear on the arms, chest, or back. The acute type can result in a rash if you already have other lupus symptoms. This type can appear quickly, does not last long, and usually does not leave scars. However, it can cause long-term discoloration of your skin. Discoid lupus. Discoid lupus is a type of chronic cutaneous lupus and is the most common. Its rash looks like a disc and most often appears on your scalp or face. Sores from the rash are often red and scaly and can lead to scarring, discoloration of your skin, or hair loss. If you have these symptoms, a dermatologist or rheumatologist may be able to help you. Drug-induced lupus. Medication causes this type of lupus, which is a form of subacute cutaneous lupus. Types of drugs that may cause it include proton pump inhibitors (often prescribed for acid reflux) and calcium channel blockers (prescribed for a variety of ailments, such as high blood pressure). Symptoms may stop when you stop taking the medication. Neonatal lupus. This form of lupus happens to infants whose mothers have SLE. Lupus Causes. Doctors do not know what causes lupus. However they think something or a combination of things triggers your immune system to attack your body. That is why most treatments are aimed at weakening your immune system. The things that lead to this faulty immune response aren’t clear, but scientists think they may include: Genes. There is very little evidence that particular genes directly cause lupus, but some genes seem to raise your risk for lupus. Hormones. Women, or those assigned female at birth, get lupus far more often than men. In addition, lupus symptoms seem to increase before monthly periods and during pregnancy when estrogen is higher. Yet, medications with estrogen, such as birth control pills and hormone replacement therapy, do not seem to raise the risk of lupus. Scientists are trying to figure out what, if any, connection there is between hormones and lupus and why women get the disease more often. Environment. It can be hard to figure out exactly which things around you act as causes of lupus. But there are some factors that scientists have strong suspicions about. These include: Cigarette smoke, stress, ultraviolet (UV) light, viruses including Epstein-Barr, herpes zoster, and cytomegalovirus. The early stages of lupus typically do not exhibit a consistent pattern of symptoms. However, initial signs may include fever, weakness, weight loss, or fatigue. Another early symptom may be pain in your joints. Lupus Treatment. Your lupus treatment will depend on several things, including your age, your overall health, your medical history, which part of your body is affected, and how severe your case is. Interestingly, lupus can change over time, it is crucial to have regular visits to a doctor, such as a specialist called a rheumatologist. Some people with mild cases don’t need treatment. Those who have more serious symptoms such as kidney problems may need strong medications. Prognosis and life expectancy. The prognosis of lupus is better today than ever before. With close follow-up and treatment, 80-90% of people with lupus can expect to live a normal life span. It is true that medical science has not yet developed a method for curing lupus, and some people do die from the disease. However, for the majority of people living with the disease today, it will not be fatal. Lupus varies in intensity and degree. Some people have a mild case, others moderate and some severe, which tends to be more difficult to treat and control. For people who have a severe flare-up, there is a greater chance that their lupus may be life-threatening. Public Education. While lupus is a widespread disease, awareness of the disease lags behind many other illnesses. 63% of Americans surveyed have never heard of lupus or know little or nothing about this disease and its symptoms beyond the name, indicating there is significant opportunity and need for continued public education. The Lupus Foundation of Jamaica is a member-sponsored, volunteer-run, organization in operation since 1984, dedicated to improve the lives and outcomes of persons affected by lupus through information, education, advocacy and support. Lupus occurs mostly in young women, at an average age of 22 years. People from African descent living in the Caribbean and North America have the highest prevalence of Lupus. For lupus patients, it is very important to pay attention to diet along with lifestyle. Delay in making the diagnosis may result in permanent severe organ disease. We all can assist the global lupus community to make lupus visible by wearing something purple on World Lupus Day by sharing stories, reaching out to policymakers, sharing lupus facts and awareness on social media. On this World Lupus Day let us join our lupus warriors in the fight against this awful autoimmune disease. Wayne Campbell is an educator and social commentator with an interest in development policies as they affect culture and or gender issues. waykam@yahoo.com @WayneCamo © #WorldLupusDay #MakeLupusVisible