A Life-Changing Diagnosis
In September 2009, Shannon Small’s life took an unexpected turn when she was diagnosed with lupus nephritis, lupus-related kidney disease. At the time, she was in her last semester of graduate school at the University of Central Florida. It all began with swollen legs and feet, which initially seemed minor but quickly escalated. By April 2009, the swelling had become so severe that she could barely bend her ankles. Shannon knew something was seriously wrong.
A grueling series of tests, blood work, and visits to specialists followed. Her doctors initially ruled out lupus because her antinuclear antibody test (ANA) was negative. However, her kidney function was abnormal, leading her nephrologist to suggest a kidney biopsy. The results confirmed what she had feared: lupus nephritis.
The diagnosis brought a mix of emotions. Shannon felt a fleeting sense of relief—finally, she had a name for what was happening to her body. But that relief quickly gave way to fear, anger, and depression. At 29 years old, she was facing a disease with no cure.
“I told my husband he should divorce me,” she recalls. “No one would fault him—he didn’t sign up for this.”
Despite the support of her loved ones, Shannon felt isolated and overwhelmed, especially as she was placed on high doses of immunosuppressants, which meant avoiding public places and even skipping holidays for fear of getting sick.
Taking Steps Toward Hope
Shannon’s journey with lupus took a positive turn when she discovered the Lupus Foundation of America and learned about the Walk to End Lupus Now in Tampa in 2011.
“It gave me something to focus on, instead of just focusing on everything I felt I had lost,” she says.
The walk became a beacon of hope, a way for her to channel her grief into something constructive.
Shannon’s first walk was a transformative experience. As she stood amidst a sea of purple-clad participants, all united by a common cause, she felt an overwhelming sense of community and support. “I was so moved, seeing the sea of purple, being around so many people who knew what I was going through,” she shares. The event marked the beginning of her active involvement in raising lupus awareness and fundraising for research, education and support programs, and advocacy.
Building a Supportive Community
Over the years, Shannon has continued to participate in the Walk to End Lupus Now, bringing along friends and family to join her. She created Facebook events, inviting her network to walk alongside her, and she spoke openly about lupus, raising awareness wherever she could. “I talk about it—all the time. Probably too much!” she says with a smile.
Although her walk team remains small, the support she has received from friends, family, and her community in New Smyrna Beach has been nothing short of incredible. From hosting fundraising events like auctions and cornhole tournaments to participating in monthly wine walks where the tips go towards her fundraising, Shannon has seen her efforts grow exponentially. “It’s incredible. I get emotional when I meet new people at our events who have a connection to lupus or want to learn more,” she says.
For Shannon, the Walk to End Lupus Now is more than just an event—it’s a lifeline. Lupus can be an isolating disease, with no two people experiencing it the same way. But at the Walk, Shannon finds solace in knowing that she is not alone.
“The Walk to End Lupus Now helps you to see that you aren’t alone,” she says. “There are so many people there who may have lupus, have a friend or family member with lupus, or have lost a loved one to lupus.”
She believes that events like Walk to End Lupus Now are essential for bringing the lupus community together, offering a rare opportunity to feel connected and supported. “The lupus community is there, it’s supportive, and it’s full of some truly amazing and inspiring people.”
As Shannon reflects on her journey, she is filled with gratitude. “I’m thankful for the support I’ve received, the willing listeners I’ve met, and the information that’s out there that helps me explain my story and journey,” she says. Her involvement in the Walk to End Lupus Now has given her a platform to share her story, raise awareness, and make a difference in the lives of other lupus warriors.
Interested in attending a Walk to End Lupus Now event in your area? Visit walktoendlupusnow.org to find a walk and register today!
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