A mother’s perspective on parenting a teenager with lupus, and watching her daughter thrive.
“She Has Lupus, But We Don’t Want Lupus to Have Her”
When Lakeya’s daughter Danielle was diagnosed with lupus at just 13 years old, the family’s world shifted overnight. Friends cried. Family members feared the worst. And Lakeya, a therapist and mother from Orlando, Florida, had to find a way to hold her family together while navigating one of the most frightening diagnoses a parent can receive.
Seven years later, Danielle is 20 years old, a junior at the University of Chicago, and preparing to run her second half marathon.
This is the story of how one family refused to let lupus define their daughter, and what other families facing a childhood lupus diagnosis can learn from their journey.
What Is Lupus in Children and Teenagers?
Lupus in adolescents is more common than many people realize. Approximately 15–20% of people with lupus are diagnosed before the age of 18. Pediatric lupus ( sometimes called childhood-onset lupus or juvenile lupus) often presents more severely than adult-onset lupus and requires careful, long-term management.
For families in Central Florida, receiving a lupus diagnosis for a child can feel isolating and overwhelming. Questions flood in immediately:
- What does this mean for their future?
- Can they still go to school, play sports, go to college?
- Is lupus a death sentence?
Lakeya’s family had all of these same questions. And like many families, their first reaction was fear.
“Many people in my family, when we told them that Danielle was diagnosed with lupus, they immediately began to cry because they thought it was a death sentence and they thought she was going to die within the next 12 months.”
The reality, with proper care and support, looks very different.
The Diagnosis: Navigating the Early Days of Childhood Lupus
Danielle was 13 when she was first diagnosed. For a teenager still figuring out who she is, adding a chronic autoimmune condition to the picture is an enormous burden that falls on the entire family, not just the patient.
One of the first challenges Lakeya’s family faced was something many lupus families encounter: people didn’t even know how to say the word.
“When my daughter was first diagnosed, my dad would call us every day to check in on Danielle’s ‘Lucas’. That’s where we started. We had to educate everyone just on how to say it.”
It may seem small, but it speaks to a larger truth: when a child is diagnosed with lupus, the whole family goes on a learning journey together.
If your family is navigating a new childhood lupus diagnosis, you don’t have to do it alone. Learn how the compassionate specialists at UCF Health’s Rheumatology team partner with families to provide expert, long-term care.
How Lakeya’s Family Educated Themselves
Rather than letting fear drive the narrative, Lakeya took a proactive approach rooted in both her professional background as a therapist and her instincts as a mother. The family:
- Read multiple books available on lupus
- Studied current research and medical literature on lupus in adolescents
- Built a close partnership with Danielle’s rheumatologist and care team
- Joined the Lupus Foundation of America for community, resources, and support
- Established a strong network of support around Danielle
“We educated ourselves as much as possible,” Lakeya says. “That’s what gave us the strength and the courage to know it was going to be okay.”
Sending a College Student with Lupus Away from Home
Perhaps the most anxiety-inducing milestone in Lakeya’s journey came when it was time for Danielle to go to college. Not just any college, but the University of Chicago, nearly 1,200 miles from Orlando.
“Sending my daughter out to Chicago to go to college by herself was one of the hardest decisions I had to make. We still didn’t fully understand what it means to be a college student with lupus. And I was sending my child away. So of course, that was very, very scary for me.”
What Families Need to Know: College Life with Lupus
For parents of teens with lupus approaching college age, Danielle’s story is a powerful reminder that a lupus diagnosis does not close doors. It does, however, require planning. Key areas for families to address before a child with lupus leaves for college include:
- Establishing care with a rheumatologist near campus for ongoing monitoring
- Medication management: Ensuring consistent access to prescriptions
- Telehealth options for staying connected with home-based specialists like UCF Health
- Disclosure plans: Knowing when and how to communicate with professors, housing, or disability services
- Campus wellness resources: Mental health, counseling, and student support groups
With the right infrastructure in place, as Danielle’s story shows, a student with lupus can not only survive college: she can run half marathons!
Planning for College? Consistent monitoring is key when a student leaves home. UCF Health offers seamless telehealth and patient portal options to keep your college student securely connected to their rheumatologist, no matter where they go to school.
How a Positive Mindset Shapes a Child’s Experience with Lupus
Lakeya is a therapist, and her professional expertise gave her a lens through which she understood something critical from the beginning:
Your mindset about your child’s diagnosis becomes their mindset.
The distinction is subtle but transformative. The way a parent frames a diagnosis, with hopelessness or with optimism, becomes the emotional blueprint the child builds upon.
Lakeya’s approach was intentional:
- She spoke with hope and optimism about the future
- She emphasized the importance of self-advocacy at doctor’s appointments
- She introduced the value of therapy, not just for the body, but for the mind
- She normalized medication compliance as a daily act of self-care, not a burden
- She consistently communicated: this is manageable, and it will improve
The result? Her daughter internalized it all.
“Now I don’t have to tell her to take her meds. I don’t have to tell her to advocate for herself. She does it on her own already.”
Danielle Today: A College Student Running Half Marathons with Lupus
Danielle is proof that a lupus diagnosis at 13 does not have to define the trajectory of a life.
At 20, she is:
- A junior at the University of Chicago, one of the most academically rigorous universities in the country
- Preparing to run her second half marathon
- Medication compliant, managing her condition responsibly
- A self-advocate who speaks up at medical appointments and listens to her body
- Living with lupus, but not letting lupus live her life
“She’s done a lot of the mental work. She’s done a lot of the physical work. She ensures that she’s med compliant. She advocates for herself when she goes to the doctor and she listens to her body. As a result, she’s able to lead a life with some level of normalcy, although she’s living with lupus.”
Lessons for Families Navigating a Childhood Lupus Diagnosis
“The biggest lesson we learned is not to set limitations on my daughter, because she knows herself and she knows her body better than we do.”
Lakeya’s journey from the terror of that first diagnosis to watching her daughter cross half marathon finish lines holds something for every family touched by lupus.
- Don’t set limitations your child hasn’t set for themselves.
- Educate yourself relentlessly. Read. Research. Partner with your child’s care team. Join the Lupus Foundation of America. Knowledge removes fear and builds confidence.
- Your emotional response matters. Children take emotional cues from their parents. Lead with hope, not despair. Your optimism is contagious, and so is your fear.
- Prioritize mental health alongside physical health. Therapy, mindset work, and emotional processing are not optional extras: They are essential parts of lupus management.
- Build a care team you trust. A reliable rheumatologist and specialists who communicate openly with both the patient and the family is foundational.
- Community changes everything. Organizations like the Lupus Foundation of America offer connection, resources, and the reminder that no family is facing this alone.
UCF Health: Supporting Lupus Patients and Families in Orlando, Florida
For families in Central Florida managing a lupus diagnosis, UCF Health’s rheumatology team provides expert, compassionate care built around the whole patient, not just the diagnosis.
UCF Health offers:
- Specialized rheumatology care for lupus, SLE, and other autoimmune conditions
- In-person and telehealth appointments: valuable for college students and busy families
- Patient portal communication for easy access between visits
- Proactive monitoring to catch organ involvement early
- A care philosophy rooted in partnership, advocacy, and patient empowerment
From managing a new diagnosis as a teenager to navigating college life and adulthood with lupus, UCF Health Faculty Physician Practice helps patients build a comprehensive care plan that makes each next chapter possible.
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- autoimmune disease healthy living lupus rheumatologist rheumatology