It’s hard to pinpoint the exact moment when Bede Marciari got sick.
As she played the piano, it felt as if her fingers were covered in burns. One morning, the Baltimore girl — who loved tennis and squash, who had run cross country — couldn’t even stand up.
“I thought for a long time I had said something bad, and it was like — karma,” said the 14-year-old, sitting in a chair in her parents’ house in Homeland.
On Tuesday, Marciari will be at the United Nations in New York to share her story as part of a panel discussion on young people who live with noncommunicable diseases.
Marciari was recently diagnosed with psoriatic arthritis, an autoimmune disease that usually shows up in adults between the ages of 30 and 50. But Marciari’s symptoms appeared while she was just a middle schooler at The Bryn Mawr School in Baltimore.
She was no longer able to attend school and, after a while, most of her friends stopped visiting. Instead, pain became a constant companion.
When the disease was at its worst, she could hardly get out of bed. She took medications that made her wake up 12 times a night, but she needed help getting to the bathroom. She listened to episodes of “Friends” on sleepless nights, scrolled through Instagram feeds and practiced calligraphy.
“I would say I’m a mix between a 4-year-old and an 80-year-old,” she said.
But convalescence gave her a new outlook on life.
“I had a lot of time to think,” she said. “I tried to be humorous about my state of wellness. … I joked that I was a sit-down comedian because I couldn’t stand up.”
Marciari has since become an advocate on behalf of people with her condition. Earlier this year she raised $16,000 for the National Arthritis Foundation, and has spoken on the radio about living with the disease.
It’s Marciari’s sense of outspokenness and positive outlook that stood out to Mychelle Farmer, who works with an organization called NCD Child and asked her to speak at the U.N. on the organization’s behalf.
“There are many adults … who have nowhere near the coping skills that this young lady has,” Farmer said.
Marciari’s symptoms began to improve after doctors finally settled on a diagnosis, and were able to provide the proper treatment. Today, she considers it a victory that she can get up out of her chair without help and can pull on a pair of ripped jeans. Until recently, her hands hurt to much to do that.
Marciari points out that she has a lot of advantages kids with chronic conditions often lack. Even when she was bedridden, she was able to take classes via Skype. She has access to some of the area’s top doctors, and her parents have jobs that allow them to take time off work to take her to doctor’s appointments. Her mother, Julia Marciari-Alexander, is director of the Walters Art Museum.
Marciari hopes her talk at the U.N. will show just how necessary it is for doctors and everyone else to pay attention to the problem of kids with arthritis. “If it’s hard for me, I can’t imagine how hard it is for [people less fortunate],” she said.
Most people who die young of noncommunicable diseases live in low- or middle-income countries, according to the World Health Organization.
While Marciari’s disease has taken away much of what made up her teenage life, it’s also given her opportunities she never dreamed of having.
Just last year, she was disappointed to miss out on the Model U.N. at Bryn Mawr.
Now she’ll experience the real thing.