Last week, I wrote about Celiac Awareness Month for May. May is also Lupus Awareness Month. Lupus is a chronic autoimmune disease that can damage any part of the body. Inflammation and damaged can occur in the skins, joints, organs, literally the entire body is under attack. It is a disease of flares and remissions. It is an immune system in overdrive. Lupus is a disease which is more pervasive and severe than people think. An estimated 1.5 million Americans are living with lupus today with more than 16,000 new cases every year. Lupus has touched my life as my cousin-in-law suffered with lupus until her death in 2013. Recently, I learned that another dear cousin-in-law has been diagnosed as well. When I learned that May is Lupus Awareness Month, I had to take the time to educate myself and hopefully others as an estimated two-thirds of people know little or nothing about lupus. Together, we can fight this disease and support those who must live with this horrible disease.
Lupus is known as the Great Imitator as symptoms closely resembles other diseases and can come and go over time, making diagnosis difficult. On average, an individual will be diagnosed within six years from the onset of symptoms. While an exact cause is unknown, scientists believe that lupus is triggered by a combination of genetics, hormones and environmental facts. Ninety percent of lupus patients are women who commonly developed symptoms between the ages of 15 and 44, although lupus can occur in children as young as infants. Lupus is NOT a form of arthritis and it is NOT contagious. Lupus affects all races and ethnicities. Although, African-Americans, Hispanics/Latinos, Asians, Pacific Islanders and Native Americans are two-three times more likely to be diagnosed than Caucasians. The difficulty in lupus is that no two cases are alike and the symptoms can vary greatly among patients. Symptoms may develop suddenly or slowly, be mild or severe, or can be temporary or permanent. Most lupus patients will experience symptoms in flare-ups and can have periods of remissions with no symptoms at all. The most common sign and symptoms are:
Fatigue and fever
Joint pain, stiffness and welling
Butterfly shaped rash on the face across the bridge of the nose and cheeks
Photosensitivity (resulting in skin lesions and rashes, fever, debilitating fatigue, and joint pain)
Raynaud’s phenomenon (fingers and toes turn white or blue when exposed to cold or during stressful periods)
Shortness of breath, chest pain
Headaches, confusion and memory loss
Due to the attack on the body, lupus can lead to various complications throughout the body. Patients can develop kidney complications often characterized by generalized itching, chest pain, nausea, vomiting and edema. Lupus can affect the brain and the central nervous system characterized with headaches, dizziness, behavior changes, hallucinations, strokes and seizures. Patients can experience memory problems and difficult expressing their thoughts. Patients can also suffer from anemia, increased risk of bleeding and blood clots, and vasculitis, the inflammation of the blood vessels). Patients are susceptible to pleurisy, inflammation of the chest cavity, and pneumonia. Lupus patients are also at greatest risk for pericarditis, inflammation of heart muscle, and cardiovascular disease and heart attacks. Patients are also at greater risk for urinary tract infections, yeast infections, salmonella, herpes and shingles. There is also an increased risk for cancer. Patients can develop avascular necrosis or bone tissue death. This is caused by loss of blood supply to the bone. Tiny breaks in the bone occur until eventual bone collapse. The hip joint is the most affected and can lead to the patient needed assistance for mobility. Lupus also poses complications of preeclampsia and preterm birth in pregnancy.
Reading the list of symptoms and possible complications is scary and heartbreaking that millions of people are suffering with these conditions. Treatments have advanced which help patients control their symptoms and even achieve long periods of remission and increase the longevity of their lives. Lupus patients can expect to live a normal lifespan. On average, lupus patients will have eight prescriptions to manage the symptoms. In 2013, the FDA finally approved the first drug designed to specifically treat lupus. Due to lupus causing the body’s immunity to go into overdrive, immunosuppressant drugs such as cyclophosphamide, a chemotherapy drug, has been shown to help alleviate symptoms. NSAIDs such as ibuprofen and naproxen, have been useful treatments. Antimalarial drugs also have been shown to help with symptoms. Corticosteroids are a common course of treatment. There are also a variety of home remedies and alternative medicines which can help as well. With the help of various treatments, many lupus patients still lead full and active lives while for others it is debilitating and greatly affects their daily lives.
In recent years, more and more famous faces have been coming forward with their own stories of lupus. I’ve complied just a few to show that lupus doesn’t have to stop life as you know it. Flannery O’Connor was diagnosed with systematic lupus erythematosus in 1951. She was told by doctors that she only had five years to live. She went on to live additional fourteen years. She died in 1964 after completing more than two dozen short stories and two novels while battling lupus. More current faces of lupus include Nick Cannon who was diagnosed with lupus nephritis (inflammation of the kidneys). Selena Gomez, Paula Abdul, Toni Braxton, and Seal all have shared their stories and continue to advocate lupus research and education as well as continue their careers and enjoy their favorite activities.
Lupus is a debilitating disease which can affect everyday activities. Many people have heard of lupus but do not know what the disease can do. During this awareness month, I want to get the word out about this silent demon which wreaks havoc on an individual’s body. I hope this post brings some understand about this horrible disease. And may it also bring awareness to someone who may not have the disease and not realize it. I’ve included websites below which you can go to for further information.
For more information:
Lupus Awareness Month www.lupusawarenessmonth.org
Lupus Foundation of America www.lupus.org