When Ivette first began experiencing rashes and hives, she had no idea the path ahead would change her life. For three years, her symptoms went unexplained until swelling in her legs led to a diagnosis of lupus nephritis (lupus-related kidney disease) in 2014. As a single mother to a nine-year-old son, hearing the words “you have lupus” was both frightening and overwhelming. She had never even heard of the disease before.
“I was scared. But I knew I had to keep going for my son.”
Finding Community and Knowledge
Like many who are newly diagnosed, Ivette turned to the internet for answers. That search eventually led her to the Lupus Foundation of America, where she began learning more about research, treatments, and eventually attended her first Lupus & You empowerment conference in 2023. These half-day education events give people with lupus and their loved ones the chance to hear directly from experts, get practical tools for managing the disease, and connect with others in the local lupus community. Ivette’s connection deepened when she was invited back the following year to sit on the Conversations to Empower You panel, where she shared her story and offered encouragement to others navigating life with lupus.
“The Foundation has been a great source of information on the latest news,” she says. “It has helped me feel more connected and more in control.”
Ivette believes that involvement is key for anyone impacted by lupus. “Getting involved gives you some control and helps you connect with other lupus warriors,” she explains.
Her advice to others seeking to take action? “Start small and pace yourself.”
Walking for a Cause
Ivette first registered for Walk to End Lupus Now®, the nation’s largest lupus awareness and fundraising program, in 2023, but illness kept her from attending that year. She hasn’t let that stop her from making an impact. She has fundraised online, rallied support from family and friends, and, in 2024, attended the Walk to End Lupus Now in Miami alongside her son.
“Seeing other lupus warriors walking together with their support systems is my favorite part of being a part of my local Walk to End Lupus Now. Lupus is a very isolating disease. Walks like this make you feel part of a community.”
Looking ahead, Ivette hopes to expand her Walk team and continue inspiring others to join the movement.
Workplace Involvement
After attending her first Lupus & You Empowerment conference, Ivette saw an opportunity to make an even greater difference. She approached her employer, Delta Media – an out-of-home advertising company, with the idea of running a pro bono campaign to raise awareness about lupus.
Her initiative turned into something much bigger: Delta Media became a national media partner for the Lupus Foundation of America, running ads for Walk to End Lupus Now events across the country on billboards, advertising screens in shopping areas and much more.
“It has been amazing,” Ivette shares. “Our team worked together on negotiating, contracting, posting, and providing proof of performance for the billboard campaign. It showed me what’s possible when your workplace steps up to support a cause.”
Her advice for others hoping to bring their workplace into the fold? “Get involved with the Lupus Foundation of America first, and then speak to your employer to see if they can help.”
A Message to Fellow Lupus Warriors
Through her journey, Ivette has learned to prioritize faith, self-care, and boundaries. “You are not alone,” she reminds others. “Have faith, and learn to listen to your body. I tell everyone that “no” is a complete sentence. Don’t feel forced to say yes to please others.”
For Ivette, walking to end lupus is more than just a day on the calendar. It is a testament to strength, community, and the power of raising your voice.
Join Ivette and thousands of others at a Walk to End Lupus Now event in your community – find a walk near you here.
Interested in getting your workplace involved? From lunch and learns to corporate walk teams and in-kind donations, anything is possible. Fill out this form, and we will be in touch!
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