Make Lupus Visible

The diagnosis of Lupus is life-altering. Each year on May 10th, World Lupus Day is commemorated. The day is set aside to raise awareness associated with lupus as well as to garner support in the fight against this unpredictable and commonly misunderstood disease. Many of us have heard of lupus, however, not many know of someone who is living with the disease. Lupus, known medically as Systemic Lupus Erythematosus, is a disorder of the immune system. A few years ago I was tested at the University Hospital of the West Indies for lupus as well as other auto-immune diseases as the doctors could not understand why I kept having chronic urticaria. Thankfully, I do not have lupus. However, while lupus predominantly affects women males are also diagnosed with this dreadful disease. Living with lupus takes a financial toll as the medications are not inexpensive. Sadly, I have known at least one individual who died from complications from lupus. What is Lupus? The Mayo Clinic states that lupus is a disease that occurs when your body's immune system attacks your own tissues and organs (autoimmune disease). Inflammation caused by lupus can affect many different body systems including your joints, skin, kidneys, blood cells, brain, heart and lungs. Lupus can be difficult to diagnose because its signs and symptoms often mimic those of other ailments. The most distinctive sign of lupus a facial rash that resembles the wings of a butterfly unfolding across both cheeks occurs in many but not all cases of lupus. Some people are born with a tendency toward developing lupus, which may be triggered by infections, certain drugs or even sunlight. While there is no cure for lupus, treatments can help control symptoms. Symptoms According to the Mayo Clinic no two cases of lupus are exactly alike. Signs and symptoms may come on suddenly or develop slowly, may be mild or severe, and may be temporary or permanent. Most people with lupus have mild disease characterized by episodes called flares when signs and symptoms get worse for a while, then improve or even disappear completely for a time. The signs and symptoms of lupus that you experience will depend on which body systems are affected by the disease. The most common signs and symptoms include: • Fatigue • Fever • Joint pain, stiffness and swelling • Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose or rashes elsewhere on the body • Skin lesions that appear or worsen with sun exposure • Fingers and toes that turn white or blue when exposed to cold or during stressful periods • Shortness of breath • Chest pain • Headaches, confusion and memory loss • Dry eyes Complications Inflammation caused by lupus can affect many areas of your body, including your: • Kidneys. Lupus can cause serious kidney damage, and kidney failure is one of the leading causes of death among people with lupus. • Brain and central nervous system. If your brain is affected by lupus, you may experience headaches, dizziness, behavior changes, vision problems, and even strokes or seizures. Many people with lupus experience memory problems and may have difficulty expressing their thoughts. • Blood and blood vessels. Lupus may lead to blood problems, including a reduced number of healthy red blood cells (anemia) and an increased risk of bleeding or blood clotting. It can also cause inflammation of the blood vessels. • Lungs. Having lupus increases your chances of developing an inflammation of the chest cavity lining, which can make breathing painful. Bleeding into lungs and pneumonia also are possible. • Heart. Lupus can cause inflammation of your heart muscle, your arteries or heart membrane. The risk of cardiovascular disease and heart attacks increases greatly as well. How is lupus treated? Treatment and management of lupus is dependent on several factors, including: the symptoms and complications you are experiencing, the severity of your case, your age, the type of medications you may be taking, your general health and your medical history. Lupus is a life-long (chronic) condition that will need to be managed regularly. The goal with treatment is to get your symptoms into remission (not active) and limit the amount of damage the disease does to your organs. Unfortunately, lupus is unpredictable and the way the condition impacts you can shift and change over time. Individuals diagnosed with lupus will need to regularly visit their healthcare provider and adapt their care plan to match their symptoms. Some people with mild features of lupus might require limited treatment. These individuals may have symptoms that are monitored and watched to make sure they do not get worse, but they aren’t currently in need of treatment. Others may need an aggressive treatment plan. These individuals tend to have more serious complications (like heart, lung or kidney complications). Your healthcare provider will discuss the best treatment options with you based on your symptoms, complications and medical history. There is currently no cure for lupus. Treatment of lupus is focused on controlling your symptoms and limiting the amount of the damage the disease does to your body. The condition can be managed to minimize the impact lupus has on your life, but it will never go away. Advocacy in Jamaica In Jamaica there is the Lupus Foundation of Jamaica (LFJ) which is the main organization assisting in public education regarding lupus and all the surrounding issues of this horrible disease. Individuals in Jamaica who are diagnosed with lupus can receive assistance with the purchasing of their medication once their healthcare provider register the medical condition with the National Health Fund. On World Lupus Day the general public is urged to wear purple as a mark of solidarity with persons who are suffering from the debilitating ailment. In an interview, President of the LFJ, Dr. Desiree Tulloch-Reid said World Lupus Day is being observed in Jamaica in order to draw attention to the problem of Lupus, and energize the community, policymakers, and the public at large to direct support and resources towards persons who are affected. While Lupus patients have an over reactive immune system, in most cases, they are not able to effectively cope with common infections. Lupus is no respecter of persons. It is important to note that you are not born with Lupus; it is not contagious, however, it can be quite a challenge to manage this disease. Lupus is a disease of the young. The average age of onset is 22, and it is everybody’s business. The Cleveland Clinic states, there can be a genetic factor to lupus. Your risk of having lupus increases if you have other family members with the condition. A mother with lupus can pass it on to her child. However, this does not always happen, nor does it happen often. Some women with lupus deliver a baby with the condition, while others do not. If you have a family history of lupus or have lupus yourself and are thinking about getting pregnant, talk to your healthcare provider. Do remember we all have a part to play in this fight against lupus. In the words of Kofi Annan, more than ever before in human history, we share a common destiny. We can master it only if we face it together. 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