Neha Kinariwalla ’14 Creates Online Forum to Translate Medical Literature Into Blog Posts
Humanology Project Aims to Destigmatize Illness
“Epilepsy has been a deeply discrediting disorder,” says WISE scholar and Scholars in Medicine participant Neha Kinariwalla in describing the focus of her research. “It’s very easily concealed, and that can be dangerous. People used to be burned at the stake for having epilepsy. They were thought to be possessed by demons — all because of a lack of understanding.”
Now Neha, with the help of the WISE program and 16 undergraduate student interns, aims to counter that lack of understanding and compassion through the Humanology Project, a website she founded that is dedicated to taking the stigma out of epilepsy and other diseases.
Neha, a Sociology major and International Studies minor, has a long-standing interest in the psychosocial effects of illness. Last year she did an independent research project on The Social Stigma of Epilepsy with faculty mentor Catherine Marrone in the Department of Sociology and presented her findings at URECA’s campus-wide undergraduate research symposium. During the summer, Neha pursued the subject further at the John Radcliffe Hospital Epilepsy Research Center at the University of Oxford. Then, with a grant from WISE, she launched the Humanology Project.
“A lot of times, people who have epilepsy — especially in developing nations — won’t disclose it to their family, and they won’t seek treatment,” says Neha, who is from Sayville. “That’s the first barrier that people hit. So we’re doing all this research in developing new therapies for epilepsy, but we’re kind of missing the point because a lot of people aren’t even seeking treatment to begin with.”
The Humanology Project is Neha’s attempt to destigmatize three illnesses that are perceived negatively: epilepsy, autism and depression. Besides being an educational website, the project is also a support forum and an undergraduate internship with 16 interns.
“We’re educating people by converting peer-reviewed literature into readable blog posts,” she explains. “In addition, we have a feature called “Share Your Story,” where someone who has one of these illnesses can write about it anonymously. Now someone who has an illness can gain a connection with someone else and compare what they’re going through.”
The new website already features articles about all three diseases, shared stories, and a list of senior advisors to the group, which includes faculty from Stony Brook and other universities.
A third-year student, Neha plans to graduate early and spend a year in a master’s program, either in sociology or philosophy, before entering Stony Brook’s School of Medicine. She has been involved with Stony Brook since middle school, when she volunteered in the Hospital’s Infant Hearing and Screening department. In high school, Neha did research in the Garcia Center’s Polymers at Engineered Interfaces Summer Research Program within the Department of Materials Science and Engineering, where she did research with professors Miriam Rafailovich and Marcia Simon. She also studied abroad at Centre ValBio Romanafana National Park in in Madagascar where she participated in an ongoing research project looking at infectious diseases in the Village Ambatolahy.
On October 10, Neha was one of two student speakers selected to present at TEDxSBU: Our Beat, Stony Brook University’s first-ever TEDx event, where she presented her research findings on the psychosocial effects of epilepsy.
By Toby Speed