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May is Lupus Awareness Month

Lupus is an autoimmune disease that affects 1.5 million Americans and millions more worldwide, most of which are women. This month we celebrate the positive impact lupus has had in our lives by raising awareness about this disease and all it encompasses. From its economic impact to the emotional toll a diagnosis takes on loved ones, we’re here to support all those affected by lupus and help them get through their tough times.

Every May, we recognize Lupus Awareness Month as a time to generate awareness and raise critical funds for life-saving research and support services. What is this currently incurable disease, and who is at risk?


History Of Lupus Awareness Month

Originally, from 1977, Lupus Awareness Month was observed as National Lupus Awareness Week in September, and then it was moved to October. It was only in 2009, owing to the efforts of the Lupus Foundation of America, that it was shifted to May as Lupus Awareness Month, and it has officially been observed throughout this month since then.

Lupus is difficult to diagnose as it is often mistaken for other diseases. Most of the time, people are not aware they are living with it. However, one common symptom that has been noted is a bright red rash on the face that runs from the bridge of the nose, under the eyes, and across the cheeks. Due to its resemblance to a butterfly, it’s known as a butterfly rash. This is likely also where it got its name from, with its scientific name being systemic lupus erythematosus and ‘erythroid’ being derived from the ancient Greek word for ‘red.’

Lupus Awareness Month has become increasingly important for lupus advocates over the years as a lot of people do not know about the disease or how to manage it. The color purple has become associated with lupus awareness. One may wonder why purple specifically? That’s because purple is a combination of the passion of the color red and the calmness of the color blue. Purple is thought to pacify the mind and nerves, uplift the spirit, and provide the courage to fight. The movement to create awareness about this autoimmune disease sees several events taking place every year in May across the country. These are aimed at raising funds for research initiatives and financially supporting affected families.


Goal Of Lupus Awareness Month

Lupus Awareness Month and World Lupus Day are dedicated to raising awareness and funds across the country and the globe. These events help to raise awareness about the physical, emotional, and financial impact of lupus. With greater awareness comes better support, resources, and advocacy for people fighting the disease. Fundraising is also important to drive research initiatives and provide support and services to those who need it.

People with lupus often suffer from joint pain, extreme fatigue, and organ damage. Lupus can affect one’s mental health as well. The disease has a tendency to flare from time to time, making daily life unpredictable. Simply put, the physical, mental, and social impacts of the disease can greatly affect the quality of life. Any amount of support can help. 


What Is Lupus?

One reason why Lupus Awareness Month is so critical is that many aspects of the disease—including its spectrum of symptom severity—remain a mystery to doctors and researchers. It is the disease that has earned the mysterious nickname of “The Disease with a Thousand Faces,” as it can lead to a wide variety of symptoms and clinical test results that differ from one person to another. Moreover, these features can change over time and often mimic those of other unrelated diseases.

Lupus is a chronic autoimmune disease in which the immune system sees the body’s healthy cells as foreign invaders and attacks them, causing inflammation and harm to the affected organs. The most common type, systemic lupus erythematosus (SLE), affects about 200,000 US adults. Anyone can develop SLE, but it is more common in Black and Latina women and women of childbearing age (15–44 years).

The causes of SLE are unknown but are thought to be related to genetic, environmental, and hormonal factors. SLE is hard to diagnose because the symptoms are often mistaken for those of other diseases. Symptoms range from mild to severe, the most common being fatigue, skin rashes, fevers, and pain or swelling in the joints.

There is no cure for SLE, but symptoms can be managed. Treatment calms the immune system to prevent periods of increased SLE symptoms called “flares” and reduce or prevent joint and organ damage. Early diagnosis, effective treatments, and taking medicines as directed can help reduce the damaging effects of SLE. CDC conducts disease tracking research and supports programs to improve care and quality of life for people with SLE.


What are the 4 different forms of lupus?

  • Systemic lupus accounts for approximately 70 percent of all cases of lupus. In approximately half of these cases, a major organ or tissue in the body, such as the heart, lungs, kidneys, or brain will be affected.
  • Cutaneous lupus (affecting only the skin) accounts for approximately 10 percent of all lupus cases.
  • Drug-induced lupus accounts for about 10 percent of all lupus cases and is caused by high doses of certain medications. The symptoms of drug-induced lupus are similar to systemic lupus; however, symptoms usually subside when the medications are discontinued.
  • Neonatal lupus is a rare condition in which the mother's antibodies affect the fetus. At birth, the baby may have a skin rash, liver problems, or low blood cell counts, but these symptoms typically disappear completely after six months with no lasting effects.


Who are at risk of developing lupus?

While anyone can develop Lupus during their lifetime, the disease most commonly affects:

  • Women between the ages of 15 and 44
  • African American, Asian American, Hispanic/Latino, Native American, or Pacific Islander individuals
  • People with a family member who has been diagnosed with Lupus or another autoimmune disease

If you are experiencing symptoms of swelling and pain, and believe that it may be caused by Lupus, talk to your doctor. He or she will diagnose your symptoms and will help you create a treatment plan to help you manage your pain and discomfort.


What is the impact of health disparities on people with lupus?

Lupus is 2 to 3 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. Recent research indicates that lupus affects 1 in 537 young African American women. 


Is lupus considered a disability?

For Social Security purposes and subject to certain criteria being met such as the involvement of two or more organs or body systems and if it includes at least two major signs or symptoms (such as severe fatigue, fever, malaise, and involuntary weight loss), lupus may be classified as a disability. 


Fast Stats

  • The Lupus Foundation of America estimates that 1.5 million Americans, and at least five million people worldwide, have a form of lupus.
  • Lupus strikes mostly women of childbearing age. However, men, children, and teenagers develop lupus, too.
  • Ninety percent (90%) of people living with lupus are women. Most people with lupus develop the disease between the ages of 15-44.
  • People with lupus can experience significant symptoms, such as pain, extreme fatigue, hair loss, cognitive issues, and physical impairments that affect every facet of their lives. Many suffer from cardiovascular disease, strokes, disfiguring rashes, and painful joints. For others, there may be no visible symptoms.
  • Our best estimate based on available data on incidence is 16,000 new cases per year. The Centers for Disease Control and Prevention (CDC) are currently gathering updated data for all ethnic sub-populations in the US, so we anticipate this number will change. The fact remains that lupus is a devastating and life-changing disease that currently has no cure.


Showing Support For Lupus

It’s helpful to raise awareness about the disease and support events and organizations that further the cause. This can be done on social media, locally in your community, or within your circle of family and friends. There are several ways you can get involved:


If you’re interested in learning more about lupus, or how you can help, check out these resources:


Filed Under: Events, awareness, event, Lupus