“Show Your Rare” is theme for Feb. 28 worldwide event
At the start of her sophomore year, Rutgers University student Allysa Kemraj found herself becoming increasingly ill.
She was diagnosed in high school with Ehlers-Danlos Syndrome, a rare genetic disease that affects the body’s connective tissue. But that fall her symptoms had worsened.
“One day in October I woke up unable to walk,” said Kemraj, now a senior majoring in cognitive science in the School of Arts and Sciences. “I had spinal stenosis caused by three ruptured discs, and in the months following, I’d be hospitalized nearly biweekly.”
The health crisis spurred her to organize the first-ever Rare Disease Day event at Rutgers. Early into the spring semester, she prepared a presentation about her illness and booked space at Busch Engineering, Science and Technology Hall. She figured a smattering of her friends would attend.
“I needed an outlet to talk about it,” she said.
But the event drew a modest audience that included faculty, staff, and students, some of whom she did not even know. There was applause, and follow-up questions.
“When I saw the turnout, I was floored,” she said. “It showed me that people from all facets of Rutgers cared, and wanted to learn more about rare diseases.”
Since then, Kemraj has made Rare Disease Day—which is observed worldwide on the last day of February—an annual tradition at Rutgers. Last year she led a discussion about research. This year the February 28 event will feature a guest speaker, the New York City-based photographer, Karen Haberberg, whose recent book, An Ordinary Day: Kids with Rare Genetic Conditions, chronicles the everyday lives of children with rare diseases.
“This book really touched me,” Kemraj said. “She was able to portray these children in a way that gives them dignity while capturing their day-to-day experience and the experience of their parents.”
Kemraj, who wants to pursue an MD/PhD and become a physician, said the book affirmed her life’s mission. “I read it and thought ‘this is what I want to do for rest of my life,’’’ she says. “These are the kinds of patients I want to work with.”
Rare Disease Day was first launched in Europe in 2008 by an alliance of health organizations with the goal of educating the public as well as elected officials, policy makers, researchers, and industry. The United States joined in 2009, and in 2013 President Barack Obama sent a letter proclaiming his support of the day.
In the U.S., a disease or disorder is defined as rare when it affects fewer than 200,000 people. One in 10 people in the United States are living with a rare disease, a total of 30 million people
Kemraj says Rare Disease Day helps patients feel affirmed, and builds awareness of the importance of scientific research. But she also emphasized that people who previously knew nothing about rare diseases are left inspired. After the 2017 event, she received emails from faculty and students, including a pharmacy major who wanted to do his project on rare diseases.
“We know that in one in 10 people are living with a rare disease,” said Kemraj, who is fundraising chair for the National Society of Collegiate Scholars, which is presenting the event.“These are people in our communities and in our neighborhoods. Our lives become richer and more meaningful when we know them and support them.”
The Rare Disease Day event begins at 8:30 pm, February 28 at the Livingston Student Center Room 201a. This year’s Rare Disease Day theme is #ShowYourRare! For more information, click here.