The UConn Undergraduate Student Government (USG) passed a statement of position regarding Rare Disease Day Feb. 12. This piece of legislation was led by Sarah Hill, a College of Agriculture, Health and Natural Resources Senator, diagnosed with Wolfram Syndrome.
The bill served as not only a recognition of the day by USG and as a representation of the UConn community but also a statement of support for funding research and treatment for rare diseases and for people with rare diseases and rare disease legislation in general.
In advocating for the bill, Hill gave a speech that ended with a standing ovation.
“Honestly, the reaction to the speech and the bill has been more incredible than I ever could have imagined,” Hill said.
Hill was diagnosed with Wolfram Syndrome at age 13, but wasn’t told about her diagnosis until age 16.
“My parents weren’t given enough resources to understand my disease fully, it wasn’t until I was 16 and entered a clinic that we were able to further understand the disease I had,” Hill said. “Even then I saw it as an opportunity because there are so many people that have it worse than me, so I still consider myself lucky because I am able to actually do what I want to do even with my disease.”
However, the senator also said she had to get to a place where she was comfortable talking about her disease.
“I was so anxious going up to it I was even imagining people speaking out against it, but people were just so supportive and became so invested so quickly it was the most incredible experience I ever had,” Hill said. “And honestly, when I started talking about my legislation it was the first time I told a room full of people that I have a rare disease, so the response meant a lot to me.”
Hill wanted to stress that having a rare disease is normal to her; it’s just part of life.
“I have a rare disease but I don’t want them to think my abilities are lowered because of that,” Hill said. “Yes, I have a rare disease, and that is part of who I am, and I can’t change that so I should not hide it. My abilities might be different from others but that doesn’t mean I’m any less valid as a person.”
Priyanka Thakkar, USG president, gave praise to Hill’s works of activism for herself and her fellow students.
“At USG we have a very strong group of members that are true activists for students of all areas of campus and walks of life,” Thakkar said. “I commend senator Hill for not only advocating for herself but for other students who struggle with a rare disease.”
One of the sponsors of the bill was Comptroller Fabio Saccomanno who said he appreciated the awareness Hill was bringing.
“As a pre-medical student, I feel it is important to recognize and bring awareness to health-related causes like Rare Disease Day,” Saccomanno said. “USG should do more to bring awareness to health-related issues so I am grateful to Senators Hill and [others] for initiating this great first step.”
But the responses were not just from the bill’s sponsors themselves. Deputy Comptroller Stuart Allen was also in attendance despite not having motioning or voting power in the Senate.
“It was a very impactful and grounding moment. When I see people stand up and fight for issues they are passionate about, especially ones that are personal, it renews my faith in the power of students to make change at UConn and beyond,” Allen said.
Senator Luis Toscano echoed the thoughts of many senators in the room that night.
“Her speech was very moving. It was so great to hear someone talk so passionately in a way that really touched people, to the point that a lot of people were on the verge of tears,” Toscano said.
After her speech, the Senate unanimously passed a vote of extreme confidence.
“We essentially took a session to recognize everything she has put into this piece of legislation,” Toscano said.
Hill had three pages going over each aspect of the statement and explained each part of the legislation thoroughly, answering the flood of questions that followed her speech. One of the questions was how to best communicate with a person with a rare disease. Hill said it was difficult to answer.
Her impact was not just on the people in USG. Hill shared her speech with the rare disease community on Facebook with lots of immediate response.
“For the rare disease I have, we’re all like one big extended family and it feels like I did this as much for them as I did myself,” Hill said. “And honestly I want this to be as effective for every individual with a rare disease or honestly just for every individual out there.”
Hill said she has not met another person at UConn with a rare disease, but what she did say is that people with a rare disease have to be comfortable talking about this and comfortable with themselves before the subject can be broached, so it was only when she was comfortable talking about it in public that she was able to write such a statement and give her speech.
Hill said there will be an event about rare diseases on Feb. 28, with more information to come.
Laila Almotwaly is a campus correspondent for The Daily Campus. She can be reached via email at firstname.lastname@example.org.