Hey 🥰
Can you believe we’ve been posting every day for Lupus Awareness Month?
This journey of sharing, researching, and connecting has been empowering. It’s reminded me why I do this—why I fundraise, why I speak out, and why your support matters. We’re in the final few days, and I wanted to talk about the different types of lupus, starting with Cutaneous Lupus Erythematosus (CLE)—the kind you can see.
🎉We’ve raised $3,072.55 toward our $5,000 goal. That means we’re just $1,927.45 away from reaching it by May 30. Thank you for helping me push forward—your support has truly carried this effort.
What Is Cutaneous Lupus?
Cutaneous lupus erythematosus (CLE) is an autoimmune disease in which the immune system mistakenly attacks healthy skin tissue, resulting in inflammation, rashes, and lesions. These rashes are often triggered by sun exposure, but they can appear unexpectedly, even in areas that never receive direct sunlight.
I never made the connection between my own skin symptoms and CLE. Over the years, I’ve had sun-related rashes, and more recently, I’ve noticed small white, ring-like spots on my arms. I also have accumulating discolorations across my extremities from odd breakouts—just enough to be annoying but subtle enough to go unnoticed until they start to add up. Until now, I hadn’t realized this could all be related to lupus.
Types of CLE
Acute Cutaneous Lupus (ACLE)
Most commonly associated with systemic lupus (SLE), ACLE often presents as a red, flat butterfly rash across the cheeks and nose. It can also appear as a widespread rash on sun-exposed areas of the skin. ACLE doesn’t usually leave scars, but it can cause discoloration.
Subacute Cutaneous Lupus (SCLE)
SCLE appears as red, scaly lesions—often ring-shaped or resembling psoriasis. It tends to show up on the shoulders, chest, and arms. SCLE is associated with sun sensitivity and often comes with fatigue and joint pain. Scarring is uncommon, but discoloration is possible.
Chronic Cutaneous Lupus (CCLE) – Including Discoid Lupus (DLE)
Discoid lupus causes thick, scaly, coin-shaped lesions that can result in permanent scarring. These often appear on the scalp, face, ears, or neck. Without treatment and proper sun protection, these lesions can become disfiguring.
Interesting Fact. Many assume musician Seal has tribal scars, but he has publicly shared that his marks are the result of discoid lupus.
CLE and SLE – A Hidden Connection
One of the most surprising things I’ve learned is that CLE can occur alone or in conjunction with systemic lupus erythematosus (SLE). In some cases, skin issues appear before any internal lupus symptoms do.
That was eye-opening for me. I’ve lived with lupus for over 20 years and still hadn’t made this connection until diving deeper this month. Sharing these stories with you reminded me how important it is to stay mindful and informed, even as a longtime patient.
How to Spot Cutaneous Lupus
- Rashes that worsen with sun exposure
- White or red ring-shaped patches on the skin
- Lesions that leave scarring or discoloration
- Persistent canker sores or scalp issues
- Skin flare-ups with no clear explanation
Treatment and Management
- Daily sunscreen and protective clothing
- Topical treatments (like corticosteroids or calcineurin inhibitors)
- Antimalarial medications such as hydroxychloroquine
- Immune-modulating treatments for more severe cases
Education is powerful, and so is action. This is one of the many reasons I support the Lupus Foundation of America, Georgia Chapter. They provide vital education, advocate for policy change in Washington, D.C., and directly support patients and families. Organizations like LFA Georgia continue to push for the awareness, funding, and research that improve lives, like mine.
If this email made you pause and reflect—or if you learned something new—please consider donating or sharing this information with someone it might help.
We wrap up the campaign on May 30, and I’ll close things out on June 1 with a final update. Until then, I’ll keep showing up—and I thank you for walking this journey with me.
xoxo,
Jowanna
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