Embracing challenges is something Bede Marciari ’22 knows a lot about. In seventh grade, she was diagnosed with juvenile idiopathic arthritis, an autoimmune disease that causes severe pain and affects all of her joints. At the height of her flare, Bede lost nearly all her muscle and could not walk. She went from being an active Middle School student who loved participating in squads and gymnastics, to being unable to leave her house. To complete eighth grade, Bede had to take all her classes via Skype. She says not being able to physically attend school or hang out with her friends was challenging. “Having no social interaction at 13 was hard. Everyone was so supportive, but I still felt very alone and only talked to adults and doctors all day so I had to mature a lot.”

With that maturity came a desire to help others. In June of 2018, Bede was asked to be the youth honoree for the Walk for a Cure to Arthritis. Initially, she did not want to be associated with the disease that changed her life, but soon realized she could use her voice to help others. “I started getting excited about raising money for research for a cure,” said Bede. “ Thirteen is my favorite number, and it’s kind of ironic that this all happened to me when I was 13, so I really wanted to raise $13,000 for the walk.” Bede says she initially thought her fundraising goal was too high, so she decided to keep it a secret and only share a goal of $5,000.

In the end, Bede raised $16,000 through a variety of fundraising efforts including designing and selling custom water bottles and sweatshirts. “I couldn’t do sports or get out of bed, so I learned calligraphy and graphic design and made my own ‘B’s Hive’ logo,” Bede said. “I also got into speech writing and telling my story.”

This September, Bede shared her story with the world at the United Nations. She spoke about non-communicable diseases on behalf of NCD Child, an organization that raises money to support children with non-communicable diseases in low income situations. Bede says the experience opened her eyes. “You can get so far down in your own spiral, but these kids can’t even afford doctors or their medicine, so I’m lucky because this crazy experience has given me so many opportunities.”

Bede also credits her arthritis for giving her a newfound sense of humor. “When the pain was so bad I couldn’t sleep, I would watch Friends for days straight, and I’ve probably seen every season like ten times,” said Bede. “I like humor as a coping mechanism and my mom jokes that arthritus has made me funny, so I used to joke that I was a sit down comedian when I couldn’t stand.”

Although she is still living with arthritis, Bede’s doctors have found a combination of treatments that help manage her symptoms. Now that she’s able to walk again, Bede says her goal is to run an Ultramarathon with her dad. But for now, she says her ability to appreciate the little things makes a big difference. “I get so excited when I can just open a bag of chips for myself, or find a pair of jeans that fit me. I definitely have my bad days, but I’ve realized this can happen to anyone, so no matter what happens you have to have a good attitude.”