Alexa Chronister, who founded an advocacy group for the chronically ill in her University of Delaware freshman dorm, believes that servant leadership is an important but unheralded concept.
“I don’t think it’s talked about or taught enough,” she said. “We often think about a leader as someone who is speaking in front of a crowd and maybe is the loudest person in the room.
“I think I’ve incorporated servant leadership into the work that I’m doing,” she said of Fight Like a Warrior. “That’s where I tend to be as a leader. So understanding that concept helped me grow in that space, validate that leadership style and open my eyes to servant leaders that are very successful.
As the servant leader, she’s encouraging other people to “pursue their ideas and flourish,” which might mean giving the nonprofit’s platform to other people with different strengths.
And it also means – years after the nonprofit was founded, considering her heavy workload in law school and the need to handle her own chronic conditions – that she revamped operations, added team members to handle day-to-day work and stepped back to look more at the big picture.
“I’m thankful that there are people just as passionate about it as I am,” she said.
Her first fundraiser at age 7
Chronister grew up in Reading, Pennsylvania. She told Friends Health Connection in 2019 that her parents instilled the core values of giving back and repairing the world.
She was 7 when she held her first fundraiser, selling her toys for childhood cancer research, inspired by an aunt who died from cancer around that time. She later volunteered with the Mini-THON to conquer childhood cancer. While at the UD, she volunteered with UDance (again, a focus on cancer), Moms Demand Action for Gun Sense in America and Honors Engaging in Neighborhood Service.
The part-time jobs, internships and other career-building experiences that she lists on LinkedIn are all fundamentally about doing good. They include a preschool substitute paraprofessional, Machon Kaplan social justice fellow, National Religious Campaign Against Torture policy intern, counselor at the Play SAFE summer day camp for low-income children, Brady Center to Prevent Gun violence policy research intern, UD Student Conduct Appellate Board member, Institute for Public Administration research fellow, United States of Care public engagement intern, WEGO Health patient leader advisory board member, BioCryst Pharmaceuticals legal intern, Duke University’s Health Justice Clinic legal intern and scholar at Duke’s Margolis Center for Health Policy.
In 2019, Fight Like a Warrior was named Best in Show in the community category of the WEGO Health Awards. WEGO calls itself the world’s largest network of patient leaders, encompassing patient advocates, health activists, health community leaders, patient influencers and patient experts.
Chronister picked the University of Delaware for its national reputation and strong public policy program. Plus she loved the vibe that she experienced on her campus tour.
In 2020, she earned a Bachelor of Arts in public policy, summa cum laude, with honors distinction, with a minor in social innovation and entrepreneurship. She also completed a thesis focused on health policy and disease advocacy. She now attends Duke Law School in North Carolina.
And through much of it, she was in pain.
Diagnosis and condition management
“Alexa’s medical challenges started early in childhood, but went undiagnosed for years,” The UpBeat wrote. “Doctors originally shrugged off her problems as ‘growing pains,’ but by the time she got to high school, Alexa’s health challenges took her back for a diagnosis – and she was told by a physician that the pain was ‘in her head.’ Her amazing parents taught her about self-advocacy and empowerment.”
In 2016, as a UD freshman, she was diagnosed with Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome.
Symptoms vary, but for her, they include chronic pain, dizziness, fatigue, gastrointestinal issues and a quickened heart rate. EDS is classified as a rare disease, meaning there are fewer than 200,000 cases worldwide per year, “but it’s believed more people have the condition and it’s under-recognized and under-diagnosed,” she said. POTS is more common, and hence more understood.
She has Type 3 EDS, which often causes easily bruised skin and joints with an abnormal range of motion. Chronic joint pain can lead to other issues, and so she was diagnosed with POTS, which “affects parts of the nervous system and bodily functions that we don’t typically think about,” according to a 2020 Horn Entrepreneurship profile.
“I mainly manage these with physical therapy, exercise and medication,” she told Trend-Able.com. “These symptoms can make day-to-day activities a challenge, but I try to not let them stop me from doing the things I really enjoy!”
Chronister improves her outlook by journaling (a gratitude journal is a gift from her grandmother) and collecting thought-provoking cards, photos and printouts in a display on the wall in her home.
She also collects inspirational quotes and lives her life based on many of them, including one often attributed to poet Maya Angelou: “I can be changed by what happens to me, but I refuse to be reduced by it.”
1,000 cards expressing hope
Another is from motivational speaker Josh Shipp: “You either get bitter or you get better. It’s that simple. You either take what has been dealt to you and allow it to make you a better person, or you allow it to tear you down. The choice does not belong to fate. It belongs to you.”
“This quote has been something that continues to stick with me in my fight,” she told Trend-Able. “I don’t have control over my genes or the chronic illnesses I have been diagnosed with, but I do have the power to decide how I react. I can succumb to my illnesses and let them win, or I can continue to fight and chase my dreams.”
It took months for her conditions to be correctly diagnosed, so she learned how to self-advocate. “I started Cards for Warriors after looking for my own resources and inspiration,” she said. “I found a sense of community online, finding people that I could talk to that had my conditions.”
Cards for Warriors featured an online community that sent handmade cards to anyone battling an underlying health condition to push them to keep fighting. It evolved into Fight Like a Warrior.
“But she wasn’t just looking for a handful of students to write ‘get well soon’ on cards to anonymously send out,” according to that earlier Horn profile. “Her purpose was to inspire positivity and a sense of community by finding volunteers that were patient advocates as well. They would write to loved ones and friends of loved ones, and nominate others that they wanted to get involved.”
Almost 1,000 cards have been written, raising that sense of community for the recipients and, by often being posted online, for many others. To maintain privacy, cards are sent through the nonprofit, meaning the sender and recipient have just that one connection.
One card shared on the group’s site begins with a quote from writer Mary Anne Radmacher: “Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day, saying ‘I will try again tomorrow.’”
The business-entrepreneurship lens
Chronister’s minor in social innovation and entrepreneurship helped her nurture and evolve the nonprofit. “The biggest influence for me was Professor Stephanie Raible, who introduced me to social entrepreneurship and how my aims could be pushed through the business-entrepreneurship lens. She kept me energized,” she said. “Then her practicum was really helpful because of how the class was designed, giving me a ton of awesome advice and insights.”
“Our main message is that sick fights back, and a diagnosis doesn’t have to stop you from continuing to live your life,” she told Friends Health Connection. “We want them to do more than survive. We want them to continue life, pursue their dreams and do what they love. We really work to provide the space and perpetuate that message.”
Fight Like a Warrior has gone far beyond cards, although that’s still a feature. “We’re continuing to grow particularly in our resource offerings, because a lot of people are having challenges navigating the healthcare system and getting the things that they need and navigating life,” she said.
During the pandemic, it asked community members to take a pledge to wear masks – a particularly significant statement of support when being with people who are already not feeling well.
Fight Like a Warrior calls itself “an online community of 20,000+ warriors, caretakers, medical professionals and advocates.” Its eight leaders, three advocacy team members and 12 team members are all young women, and that commonality has been noticed internally and externally.
Research shows that women are more likely to have symptoms dismissed (leading to misdiagnosis or diagnostic delay). “Their voices are not being heard,” she said of these young women, adding that she is actively recruiting from other demographics.
“There’s a lot of different ways your voice can be pushed aside,” she told PatientOrator.
“The patient’s voice is not necessarily part of health care conversations, and I think that that is a failure,” she said in the interview.
Plus, it is more easily finding young women using its extensive social media presence.
‘What’s important in life’
Her underlying condition has physical symptoms (“I continue to deal with a variety of different symptoms, but it is much more manageable today”), and it also impacts her perspective on life.
“It’s a lot of work in self-advocacy for myself and figuring out a lot of different things.,” she said. “But I’m really happy to be in the place that I am today. Definitely a lot better than where I was.”
She acknowledged that people can react differently to their diagnoses. “For some people, it’s like ‘My goodness, that’s horrible that you were diagnosed with XYZ,’ but for me – and a lot of people – it’s just categorizing what I’m already experiencing,” she said. “It’s not necessarily telling me that something bad is going to happen. I’m already living it. It’s definitely validated what I was going through and it allowed me to get on the right track.”
“It’s made me a lot more compassionate and understanding of other people’s situations,” she said. “It has also opened my eyes to the amount of children, adolescents and young adults that are dealing with chronic conditions and often invisible conditions day to day. And that population is often neglected or not thought of.
“It has made me resilient, because I had certain goals that I wanted to achieve in college and beyond, and I really didn’t want these conditions to get in the way,” she said. “So I think that it’s made me a grateful person that lives in the moment, and I’m definitely in a better place now with those conditions than when it first started, when every day was really hard on me.
About Horn Entrepreneurship
Horn Entrepreneurship serves as the creative engine for entrepreneurship education and advancement at the University of Delaware. Currently ranked among the best entrepreneurship programs in the US, Horn Entrepreneurship was built and is actively supported by successful entrepreneurs, empowering aspiring innovators as they pursue new ideas for a better world.