Lexi : Simply Telling Her Story Leads to an Important Invitation
Some rising high school seniors will scout colleges for their social scene. Many might choose a college based on its proximity -- or lack thereof -- to home. Others will simply go where their friends are going. Lexi Narotzky has a different set of criteria.“I’m looking to go to Vanderbilt in Nashville if I can get in,” says Lexi. “It’s a smaller school where I won’t have to walk as far. The campus is very flat and very accessible for days I am not feeling well. And, the weather is better than it is here in New Jersey.”
Lexi has been making choices like this since she was a toddler. Lexi clearly remembers when she was diagnosed with polyarticular juvenile rheumatoid arthritis, even though she was just three years old.
“I remember the exact night it all started,” Lexi says. “I had just gotten home from dance class, and I was wearing my tights. All of the sudden, I couldn’t move. “
In the weeks that followed, Lexi spent many days in the hospital and visited multiple specialists. High fevers and swollen joints stumped doctors, even at some of the country’s most renowned medical institutions.
“I think a lot of the doctors hadn’t seen anything like me before,” says Lexi. “For a three year old, arthritis was definitely not the first thing they thought of.”
With 14 years of juggling medications and doctors with school and other activities behind her, Lexi admits that everyday activities that most of us take for granted can be a challenge for her.
“Most mornings, it takes time for me to get moving,” Lexi says. “At school when I have to write a lot, my hand will start cramping. Sitting still at school makes me really stiff.”
Lexi also has to be aware of her limits, which would be challenging for any boisterous teenager.
"It’s humbling to watch your contemporaries participate in gym class while you sit on the sidelines knowing that if you run too far or too fast, you may not be able to even walk up the stairs to your bedroom when you get home," Lexi says.
Fortunately, Lexi has hit her stride through her involvement with the Arthritis Foundation, even serving as the National Young Adult Honoree of the 2015 Walk to Cure Arthritis. Lexi also traveled to Washington, DC this past March for the Arthritis Foundation’s Advocacy Summit. There she joined other advocates to share their stories and urge members of Congress to support policies that help people with arthritis have access to quality care and medications.
“I loved the advocacy summit because I met a bunch of teenagers just like me,” Lexi says. “It was so nice to meet people my age going through the same thing. Now I know I’m not alone.”
Lexi’s story struck a particular chord with Congressman Rodney Frelinghuysen (R – N.J.) when she visited his office in Washington DC.
“I told him about how doctors didn’t know what was wrong with me,” Lexi says. “I shared how many adults and children live with arthritis, and how it’s time for a cure.”
Lexi’s powerful story prompted Congressman Frelinghuysen to invite Lexi and her fellow advocates to visit him and his colleagues at the National Institutes of Health (NIH) on June 15. They plan to tell their stories to researchers and decision-makers in hopes of obtaining more funding for arthritis research. For Lexi, visiting the NIH is just one way that she is a Champion of Yes.
“When Congressman Frelinghuysen invited us to the NIH, I felt like we’d taken a huge step in the right direction,” says Lexi. “I’m a Champion of Yes when I persevere, when I work hard and when I tell my story. I’m not letting anything slow me down.”
Update: Read about Lexi's visit to the NIH!