By Jaimie Julia Winters
When Miah Andrade was 7 years old, her parents noticed something unusual—small waves and dots forming on her fingernails. What followed was a two-year search for answers that left the Kearny family frustrated and, at times, dismissed.
“We knew something wasn’t right,” her mother, Elizabeth SantaCruz, said. “But again and again, we were told everything was fine.”
As the symptoms progressed — first to Miah’s toenails, then to a rash on her face — the family consulted multiple dermatologists and allergists. Each visit ended with reassurance but no explanation.
Diagnosis that changed everything
The turning point came when one dermatologist took a more methodical approach.
“She gave us a plan,” SantaCruz said. “First, we ruled out inflammation, then infection. When those didn’t work, she moved forward with a skin biopsy.”
A week later, the family received the diagnosis: lupus, a chronic autoimmune disease in which the immune system attacks healthy tissue.
“It was scary because we didn’t even know that word existed,” she said. “We were surprised, confused, and overwhelmed — but also relieved to finally have answers.”
For Miah, the diagnosis marked a shift to a new routine of specialized care, including regular visits to a pediatric rheumatologist and frequent blood tests.
“Sometimes it would be 10 to 14 tubes,” Miah recalled. “And I had to start taking pills, which was hard because before that all my medicine was liquid.”
Living with the ‘invisible illness‘
Lupus can affect each patient differently, often in ways that are not immediately visible. Miah says that’s one of the hardest parts for others to understand.
“Even though I might look OK, it doesn’t mean that I feel OK,” she said. “Some symptoms you just can’t see.”
Elizabeth describes the daily realities as complex and often exhausting.
“Lupus fatigue is more than just being tired,” Elizabeth said. “It can drain you physically and mentally. And during ‘lupus fog,’ even simple things can become difficult.”
Turning struggle into advocacy
Elizabeth has become a tireless advocate for awareness and research funding since her daughter’s diagnosis in 2016. What began as a perplexing two-year period of unexplained symptoms and visits to numerous doctors has since evolved into a public effort to educate others about the disease.
“As a mom, I wanted to build a world of understanding for my daughter,” she said. “A world where people know what lupus is—and that it can affect children.”
Through their initiative, CaringForLupus, Elizabeth and her family have organized fundraising events and awareness campaigns, raising significant support for lupus research. Their advocacy efforts culminate each year during Lupus Awareness Month in May, when they help lead ribbon-cutting ceremonies across multiple locations to bring visibility to the disease.
Local efforts to national impact
The initiative has grown from local outreach into national advocacy. Miah has traveled to Washington, D.C., to speak with lawmakers about the urgent need for lupus research.
“I don’t want to be 65 until the next medication is created for lupus,” Miah told elected officials.
She has also shared her story on national stages, including the American College of Rheumatology’s annual conference, where she became the first minor to present—a milestone in the lupus community.
Elizabeth, meanwhile, was selected as one of 10 participants nationwide to take part in a Patient-Focused Drug Development meeting with the U.S. Food and Drug Administration, helping bring patient voices directly to regulators and pharmaceutical companies.
Community that shows up
Despite the challenges, both mother and daughter emphasize the importance of community support — something they say Kearny and neighboring towns such as Harrison, East Newark, and North Arlington have provided in abundance.
At Franklin School, which Miah attends, students participated in lupus awareness assemblies, and staff created a mural in support of Miah. Even during difficult periods, when visible symptoms affected her appearance, Miah said she felt accepted.
“No one ever said anything negative,” Elizabeth said. “That meant everything to us.”
Ongoing challenges
Still, challenges remain for families affected by lupus, particularly access to care.
“Some parents have to travel out of state to find pediatric specialists,” Elizabeth said. “Patients, especially children, need better treatment options and better access.”
For Miah, advocacy is also about connection and encouragement.
“I would tell someone who was just diagnosed that they’re not alone,” Miah said. “It’s important to learn about lupus and have a supportive team around you.”
Building understanding
As Lupus Awareness Month approaches in May, the family is preparing to continue its outreach, encouraging others to participate by wearing purple, sharing information, and supporting those living with the disease.
“It’s a time when lupus patients feel seen and heard,” Elizabeth said.
Their message to the community is simple but urgent: awareness matters.
“Lupus can affect anyone, including children,” she said. “The more people understand, the more compassionate and supportive our communities can become.”
Kearny will hold a Lupus Awareness Day on May 2 at 10 a.m. at the Kearny Town Hall. For more information, visit the CarimngForLupus Facebook page.
Watch an interview with Miah here.
