May is Lupus Awareness Month!

Also known as systemic lupus erythematosus (SLE), lupus is a chronic autoimmune disorder in which the immune system mistakenly attacks different parts of the body such as the joints, kidneys, skin, lungs, heart, and brain. 

Did you know that doctors don’t know the exact cause of lupus? Many physicians believe that people are genetically predisposed to lupus then triggered by an environmental trigger like sunlight, medication, or infections.

Did you also know that people with lupus might show varied symptoms like a butterfly-shaped facial rash, joint pain, fatigue, fever, Raynaud’s phenomenon, chest pain, dry eyes, and memory loss, among others? These symptoms are extremely variable; some people experience mild symptoms, while others have severe symptoms, and these symptoms can be temporary or permanent. Lupus can also cause a complication called lupus nephritis

May is the perfect month to spread awareness and education about lupus, and for people with lupus to share their stories to the broader community. Why? Because it’s Lupus Awareness Month! 

What to Do During Lupus Awareness Month

The Lupus Foundation of America explains that Lupus Awareness Month is a great way to “Make Lupus Visible,” promoting education, awareness, research, and support. Since lupus is considered an invisible illness, where symptoms may not be apparent to others but can have significant psychological, financial, emotional, and physical impacts on those affected, sharing information serves as a crucial way to shed light on this misunderstood condition—and to find support for individuals and families within the lupus community. 

If you’re looking to get involved and raise awareness but don’t know how to start, don’t fret—we have ideas. Consider some of the following:

  • Share your story. If you have lupus, or a loved one has lupus, consider sharing with Patient Worthy or on social media. You can describe what the daily experience of living with lupus is like, treatment and management, or anything else you feel is critical to awareness. The Lupus Foundation of America offers a social media toolkit to help you get started. 
  • Fundraise. Fundraisers can collect valuable money to be used towards family support, developing educational programs, or research. Research is particularly critical in identifying novel treatments and advancing understanding of the disease.
  • Wear purple on May 10. Make lupus visible by wearing purple—whether it’s a purple hat, sunglasses, shirt, or anything else that sparks your fancy! If you’re feeling creative, you can even dye your hair (temporarily, of course). Use #MakeLupusVisible or #LupusAwarenessMonth to share your purple on social media.
  • Take the Purple Pledge. This pledge says that you will work to raise awareness year-round! 
  • Contact the media. Write to your local news platform or TV station asking them to cover the stories of people in your community with lupus, or to run a program talking about this condition and what this month is all about.

Have any other ideas? Contact us and let us know!

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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