Hi 😊💗💗💗
Can you believe we’ve made it to Day 27 of Lupus Awareness Month?
We’re in the final stretch, and I’m incredibly grateful you’ve stayed on this journey with me. These last few days are personal, layered, and filled with hope—and I want to finish strong with compassion, with education, and with a real push to meet our $5,000 fundraising goal for the Lupus Foundation of America, Georgia Chapter.
Before we wrap up the month, I’ll be sharing the different types of lupus, starting with the one I live with: Systemic Lupus Erythematosus (SLE). I saved this for last because it’s the most common form, but also one of the most complex and misunderstood.
Although there is no cure, lupus can be effectively managed. Today, more people with lupus are living normal life spans with a higher quality of life. And that’s because of science, research, education, emotional support, access to care, and patient advocacy—exactly what the LFA fights for.
Let’s talk about SLE.
What is SLE (Systemic Lupus Erythematosus)?
SLE is the most common form of lupus, affecting about 70% of people diagnosed with the disease.
- Most common age of diagnosis: Between 15 and 45 years old
- Higher prevalence in women, especially women of color (Black, Hispanic/Latina, Asian, and Indigenous women are disproportionately affected)
- Symptoms vary greatly: From fatigue, joint pain, and rashes to life-threatening inflammation in organs like the kidneys, lungs, or heart
- Ten-year survival rate: Over 90%, thanks to earlier diagnosis, better treatments, and patient-centered care
It’s important to know that while many people live full lives with SLE, complications can still occur, especially when there’s severe disease activity, organ involvement, lack of emotional support, or barriers to quality healthcare.
There was a time when the 10-year survival rate was only 50%. Today, because of decades of investment in lupus research and care, that number has improved dramatically.
But there’s still more work to be done.
My Experience with SLE
SLE has affected me both neurologically and physically, and it hasn’t always been easy to treat. I’ve never had direct involvement of any vital organs, but I’ve experienced complications like inflammation around my lungs and heart (pleuritis and pericarditis). If left untreated, those symptoms could have led to serious, long-term issues.
There were times when I felt myself getting worse inside—yet my doctors dismissed me because I didn’t look like I was suffering. Thankfully, I had some doctors who insisted I advocate for myself and a husband who believed me, even when he felt helpless. And that belief made all the difference.
Is It This... or Is It Lupus?
This month of awareness has reminded me to be more mindful of the subtle signs of my own condition.
Lately, I’ve felt feverish, a little under the weather, with joint pain, tenderness in my mouth, and even some new rashes. Nothing severe, but enough to prompt a check-in with my rheumatologist.
Because here’s the thing…
- That canker sore? Could be a toothbrush accident—or lupus.
- The rash? It could be menopause or lupus.
- My stomach issues? Could be something I ate—or lupus.
- The joint pain? It could be inactivity or lupus.
I’m sure you’re getting the point.
Even with over two decades of living with SLE, it still requires awareness and advocacy to stay ahead of the disease. And that’s why this campaign matters so much.
Why I Support the LFA Georgia Chapter
The Lupus Foundation of America – Georgia Chapter does more than raise awareness. They educate patients and families, advocate for change both locally and in Washington, and fund the research that helps improve quality of life and save lives. This organization makes a tangible impact on people like me and countless others across the country.
They’re part of the reason survival rates are improving, awareness is spreading, and patients have access to better resources and education. And their advocacy work helps ensure continued federal funding for lupus research and community programs.
Notable People with SLE
These individuals have helped shine a light on lupus through their public platforms and deeply personal experiences.
💜 Toni Braxton
Diagnosed with lupus in 2008, Toni has spoken publicly about how the disease nearly took her life. In 2022, she underwent emergency heart surgery due to complications from lupus-related artery blockage. Despite the physical toll, she continues to perform, advocate, and educate—especially about how lupus affects Black women.
💜 Selena Gomez
Selena was diagnosed with SLE in her twenties and received a life-saving kidney transplant in 2017. She’s shared the emotional and physical impact lupus has had on her life, using her platform to speak up for mental health, chronic illness awareness, and organ donation.
💜 Nick Cannon
Nick was diagnosed with lupus nephritis—a form of SLE that affects the kidneys—after experiencing kidney failure and blood clots in 2012. He has since adapted his lifestyle to manage the condition and uses his public voice to educate and raise awareness, particularly within the Black community.
💜 Kellie Martin
You might remember Kellie Martin from her roles on Life Goes On, ER, and A Goofy Movie. Her journey with lupus is deeply personal: she lost her younger sister, Heather, to the disease at just 19 years old. Heather’s diagnosis came late, and her lupus progressed rapidly. Since then, Kellie has become an outspoken advocate for lupus awareness and early diagnosis, emphasizing the importance of listening to patients and promoting better education within the medical community.
Let’s Cross the Finish Line Strong 💜
So far, we’ve raised $3,072.55 of our $5,000 goal. I’ll be making one final personal donation on May 30—and I would love to have you join me for these last few days.
Can you help by sharing this campaign, making a donation (or even a second one), or just spreading the word?
📌 Donate or Share the Campaign
I’d also love to hear from you. Did any of these updates speak to you? Was there something new you learned? What would you like to see more of in future awareness campaigns?
Just reply and let me know. I read everything.
Thank you for being part of this. Thank you for letting me into your space. And thank you for believing that we can do better together.
xoxo,
Jowanna
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📧 Email: [email protected]
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