Leap Day only comes around every four years, but people living with rare diseases have surpassed odds much greater than that. After the Undergraduate Student Government (USG) passed a statement of position to recognize Rare Disease Day on campus, as well as show support for rare disease treatment and those living with a rare disease, they hosted an event in the Student Organization Center (SOC) last Friday to commemorate the day. The legislation and event were led by Sarah Hill, a College of Agriculture, Health and Natural Resources Senator, who lives with Wolfram Syndrome.
“I think it was important for UConn have Rare Disease Day be recognized because a lot of people, myself included before I was diagnosed with a rare disease, do not know about it and do not know about rare diseases or the impact they can have on individuals’ lives,” Hill, a sixth-semester environmental studies major, said. “I think, or I hope, the impact will [bring] broader awareness on campus and in our world at large about rare diseases and why this issue matters, so that there is a collective movement to create positive change.”
When students entered the room, Hill directed them toward a QR code to take an online quiz about rare diseases, including statistics about those living with a rare disease and how it may affect their lives, such as the decrease in likeliness of receiving a job offer.
“[T]here are a lot of people who do not know the true amount of people who have rare diseases and whose lives are impacted by rare diseases,” Anna Pratt, a fourth-semester political science major and CLAS Senator, said. She mentioned how she hadn’t considered the perspective of the impact of having a family member with a rare disease, which was addressed in one of the quiz questions. “Talking about rare diseases also decreases the stigma that has formed in society around talking about personal matters such as having a rare disease and makes a more inclusive atmosphere for people who have a rare disease or are impacted by rare disease. Having a rare disease should not be a topic that is taboo to discuss but should be called attention to instead.”
Once students completed the quiz and were shown the answers, many reported low scores of three or four, and expressed interest in learning more about rare diseases. They then could receive a stuffed zebra or free t-shirt promoting Rare Disease Day.
“The zebra is like the rare disease mascot, [as] zebra is an actual term that has been used in medicine to mean a very unlikely diagnostic possibility,” Hill said.
Students were also encouraged to write on a paper cut-out of a hand what rare means to them, relating to this year’s theme, “Reframe Rare.” The theme seeks to redefine the concept of “rare” in society, especially for those who may not know much about rare diseases.
“To support those with rare diseases, I think it has to be noted that … they may not feel comfortable telling you and being open about it yet,” Hill said. “Or, they also may not know they have a rare disease because it may still be undiagnosed.”
Pratt was one of the USG senators who had voted on passing the statement of position for Rare Disease Day.
“As a USG senator, I know Sarah Hill personally and I got to hear directly from her about why she felt having a Rare Disease Day [at UConn] was important,” Pratt said. “Seeing her be so passionate about an event and seeing how much effort went into planning made me want to attend and support her.”
Hill addressed what living with a rare disease may mean when dealing with other societal problems, like the state of the nation’s healthcare system, referring to the lack of universal healthcare and coverage for preexisting conditions.
“Rare diseases is an issue that is often forgotten about, and we need to make it something that cannot be forgotten about,” Hill said, encouraging people to contact their local and state government representatives. “Educate your reps, educate your friends, educate your family, talk about this issue, don’t let it stay hidden.”
Beyond raising awareness and supporting additional research into rare diseases, Hill reminds people of how else they can easily support those living with one.
“I think it goes back to just being a nice person in general, because you never know what someone is going through,” Hill said.
Hollie Lao is a staff writer and the social media manager for The Daily Campus. She can be reached via email at email@example.com.