One family's journey
It’s a graceful image on a t-shirt: a heart with wings, emblazoned with the initials EQN and the words “Go! E-Team Go!” Designed by Emily Nguyen, a Philadelphia-area middle-schooler with lupus. The flying red heart speaks volumes about the lessons she and her family have learned as they cope with the chronic disease. High on the list: Don't go it alone.
Connecting with others gave them strength
“Shortly after Emily was diagnosed in 2012, a family friend introduced us to a young woman who had developed lupus as a teenager,” says Phong Nguyen, Emily’s father. “She talked with us about her experiences and suggested we join the Philadelphia Tri-State Chapter of the Lupus Foundation of America."
"It’s difficult when someone you love so deeply goes through this and you feel there’s nothing you can really do to change it. Connecting with other people gave us strength and gave Emily strength, too.”
Soon after, the family organized a team for the Walk to End Lupus Now. The E-Team has returned every year since. “A lot of friends and family support us,” notes Angela Chapson, Emily’s mother. Emily, who loves to draw and paint, created the heart logo for the team’s T-shirts.
That’s another lesson Phong and Angela have learned: Keep the focus on your child and his or her interests—not on lupus.
“Emily’s got a very normal life,” Angela says. “She goes to karate with her younger sister, Anna, and she plays soccer. The girls love to play with their bunny, Cider. We take family vacations. She’s a typical seventh-grader.
Yes, we have worries and concerns. She sees doctors more than most kids do and takes medications every day. We’re careful about avoiding infections. And we pay close attention to her health, as you would with any child. We try to strike a balance.”
The signs and symptoms of lupus in children
“In children, lupus is often severe very early on,” says David D. Sherry, MD, an attending rheumatologist at The Children’s Hospital of Philadelphia (CHOP). “Treatment usually includes a steroid medication and chemotherapy to reduce inflammation and quiet the immune response. These powerful drugs have temporary side effects such as hair thinning and weight gain, but they can put lupus into remission and help protect against organ damage, as they did for Emily.”
Lupus in children is more common in girls than boys. Children of Asian, African, and Latino descent are at higher risk than Caucasians. And family history also increases the odds. Though most kids who fit these profiles will not develop the disease, Emily did.
“When Emily was 8, we noticed red marks—like mosquito or tick bites but very bright and not itchy—on her knees,” Angela recalls. “We took her to the doctor and she seemed fine. A few days later, another mark appeared and she had a fever, too. The doctor suggested getting blood tests to find the cause.”
Blood work revealed low platelet counts. Emily was admitted to CHOP for further tests. “There’s no single test [to diagnose lupus] because the disease can affect so many different body systems,” explains Dr. Sherry, who is Emily’s rheumatologist. “If a child has at least four of 11 criteria developed by the American College of Rheumatology, there is a strong chance it’s lupus.”
Emily had four: the rash; a mouth ulcer; low red and white blood cell counts; and protein in her urine, a sign of possible kidney damage. A kidney biopsy confirmed that her kidneys were a target.
“Emily received high-dose steroids and got her first of eight, once-a-month chemotherapy sessions right before we went on our first Disney cruise,” Angela says. “On the trip, Emily’s hair began falling out. So we got her some scarves and a hat and tried to keep things really normal.”
Taking part in awareness activities can help
“When Emily started third grade she looked very different than she had at the end of second grade,” her mother says. “She wore a hat. And she’d gained weight due to the steroids. The school organized a mini-walk fundraiser that took place at lunch one day. That raised lupus awareness among children who didn’t know about the disease or what Emily was experiencing. It was super-helpful for Emily.”
Emily’s parents try hard to help her and her younger sister pursue things that matter to them. “I remember one day, during her early treatment, when it was cold outside, Emily started thinking about how cold it would be for someone who was homeless,” Phong recalls. “She wanted to make blankets, like the blanket she had received from the older girl with lupus whom we had talked with. Emily took that blanket to all of her chemotherapy sessions. Emily bought fleece fabrics with her own money, decorated them, and we went to a homeless shelter. She gave them to a family there. It helped us understand what an incredible child she is.”
Phong and Angela also stress how impressed they are with Anna. Her support and encouragement of her older sister has played an important role in Emily’s life, they say.
Fast-forward to today: Emily’s been in remission since her initial treatment. She takes medications to protect her kidneys and discourage flares. “I have to be extra-careful and try not to catch colds and things like that,” she says. “I wash my hands a lot.”
In addition to soccer, she plays basketball. She enjoys math and will study pre-algebra this year. “I don’t talk very much about lupus to my friends,” she says. “But if I do, I just explain that it’s an autoimmune disease that, in my case, affects my kidneys. And that I take medicine for it. That’s all.”
Support for parents of children with lupus
“Lupus is a chronic disease that requires daily attention—from making sure your child takes his or her medication to monitoring his or her health to helping them cope with side effects or symptoms of a flare-up,” notes rheumatologist David Sherry, M.D.
“At the same time, your child is just like any other kid and faces all the same challenges with school, friends, and activities.” If you’re a parent, dealing with these demands can be hard. But you’re not alone. These parent-tested, expert-endorsed tools can help:
For your marriage and family:
- Consider a support group or counseling. “Caring for a child with lupus can test a marriage and a whole family,” Dr. Sherry notes. “If you notice that your marriage is becoming strained or other children in the family are becoming upset or resentful that they’re receiving less attention, it may be time for marriage counseling or family therapy. Families assume that it’s the child with lupus who needs to see a counselor to help them cope well with their condition.
- Sometimes, it’s the whole family or just the parents who need more support.” Find support groups near you through your local Lupus Foundation of America chapter. You can also contact the Lupus Foundation of America’s health educators for help.
For health information
- Stay organized. Using a daily care plan and a care file will help you track your child’s health, corral records and information from various doctors and doctor visits, and create a record that you can refer to when communicating with your child’s health care team. A plan and a file also help other caregivers—your spouse, a relative who steps in on a busy day—to be effective and well-informed. Add extra pages for health needs and contact numbers related to your child’s school and other activities.
- Ask about a 504 plan. Part of a federal civil rights law protecting students with disabilities, a 504 plan outlines specific accommodations schools must make for qualified students age 3 to 22 so that they can perform and learn like their peers. Students must have a condition that interferes with major activities like walking, seeing, hearing, speaking, doing physical tasks, and more.
- Modifications could include a set of textbooks to keep at home, a tape recorder for taking notes in class, or other changes to meet the student’s needs.