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Researcher of the Month
WISE & Scholars for Medicine Programs; Major in Sociology & Minor in International Studies
UPDATE (3/14): Neha is SBU's first Gates-Cambridge Scholar
Research Mentors: Dr. Catherine Marrone, Sociology; Dr. Arjune Sen,Oxford University, John Radcliffe Hospital Epilepsy Research Center; Dr. Jill Miller-Horn-Stony Brook Medical Center Clinical Neurology. Previous:Dr. Patricia Wright, Anthropology, Inst. for the Conservation of Tropical Environments; Dr. Miriam Rafailovich, Materials Science & Engineering; Dr. Marcia Simon, Oral Biology & Pathology
This past April, Neha Kinariwalla presented a poster at URECA’s campus wide undergraduate research symposium on “The Social Stigma of Epilepsy”— an independent research topic she had explored in spring semester 2013 under the direction of Dr. Catherine Marrone of the Department of Sociology, College of Arts & Sciences. For Neha, this research experience was only the beginning of a project that has completely captured her interest: “I’m really glad I presented the poster when I did. People were very interested and gave a lot of insight that I was able to build on. Even though it was preliminary, I was able to exchange ideas with people and get more insight on where to take the project further.”
Go further she did! This summer, Neha travelled to the UK to work with Dr. Arjune Sen, a neurologist at the John Radcliffe Hospital Epilepsy Research Center /University of Oxford. Together, they co-designed a project to investigate the psychosocial aspects of epilepsy in married patients, through patient-spouse surveys (a project with which she will continue to be involved, remotely while back in the US). Neha has also followed-up on her research stateside, and contacted Dr. Jill Miller-Horn, Asst. Professor of Neurology and Pediatrics at Stony Brook Neurosciences Institute, with whom she will be working to start up a similar study on married epilepsy patients here in Long Island. Neha hopes not only to further understanding of the gender differences involved in patients’ perceptions of epilepsy, but also to provide a cross-cultural comparison for the UK patient study. Neha also plans to continue researching the psychosocial stigma of epilepsy under the direction of Dr. Marrone, with the potential goal of an honors thesis project in Sociology. The epilepsy research has taken Neha in other directions too: recently Neha was awarded a WISE grant to support “The Humanology Project”—a nonprofit organization which Neha co-founded that will be dedicated to destigmatizing illnesses, through the use of multi-author blogs and an interactive support forum.
This fall, Neha will be serving as a TA for ITS 101—where First Year students will be reading Anne Fadiman’s “The Spirit Catches You and You Fall Down.” Neha looks forward to meeting the author who is coming to campus on October 16, and whose work has so illuminated cross-cultural responses to epilepsy and its treatment.
A Sociology major in the WISE program (graduating May 2014), and a participant in the Scholars for Medicine Bachelor's/MD program, Neha is a graduate of Sayville HS (June 2011), born and raised in Long Island. She has been involved with the Stony Brook University/Medical Center community since middle school years when she did volunteer work for the Hospital’s Infant Hearing and Screening department. As a high school student, Neha participated in the Garcia Center MRSEC Polymers at Engineered Interfaces program, where she was engaged in research on dental pulp stem cell growth and differentiation with Dr. Miriam Rafailovich and Dr. Marcia Simon and was named a Siemens semifinalist. She also participated in Cold Spring Harbor Laboratories’Partners for the Future Program; and participated in medical missions to Nicaragua and Ecuador.
As an undergraduate at Stony Brook, a meaningful global experience for Neha was studying abroad in Centre ValBio Romanafana National Park,Madagascar (2012) where she had the opportunity to do field work and join an ongoing research project looking at infectious diseases and diarrheal illnesses in the Village Ambatolahy. She was happy to contribute her photography skills (see Centre ValBio slideshows); and also interned at theInstitute for the Conservation of Tropical Environments (ICTE) office (June-December 2012), in particular working with Soles4Souls. She also participated in a 2012 Virtual Student Foreign Service internship with the US Embassy of Madagascar. In addition to Study Abroad experiences in Madagascar and England, Neha has traveled several times to India (winter 2012/2013) where she volunteered in the Manav Sadhna-Gandhi Ashram Loving Community on health initiatives.
Neha plans to pursue studies in medical sociology and neurology, and will be attending Stony Brook Medical School in 2015. Below are excerpts of her interview with Karen Kernan, URECA Director.
Karen: What is your research about?
Neha. My research is on the social stigma of epilepsy. The project started out as a general literature review that I conducted under the guidance of Dr. Catherine Marrone of the Sociology Department. I was really intrigued by epilepsy — a neurological medical condition that affects 50 million people worldwide. Three quarters of this population live in poor countries of the world and up to 94% of these cases are untreated. A major reason for this treatment gap is the omnipresent social stigma of epilepsy — a stigma that is often more difficult to overcome than the seizures themselves, and that can discourage patients from seeking treatment.
When I started doing my literature review and researching the topic, I began looking at the cultural differences as well as gender disparities in the social stigma of epilepsy, as well as doing an historical review of the stigma in centuries before. Something particularly interesting to me was the disparity in the way people perceive epilepsy in developing vs. developed countries. In developing countries there was a lot more stigma as compared to the US or UK, mostly due to lack of education. Also, I was particularly interested in studying attitudes to epilepsy in India where at onset epilepsy is commonly viewed as a reason for annulling marriages, as society and parents typically arrange marriages.
What is the next step for your research? What did you do following the poster symposium?
This summer I conducted research at Oxford University at the John Radcliffe Hospital in England under Dr. Arjune Sen-a clinical neurologist at the JR Hospital. Basically, what we did was to administer questionnaires to patients who had epilepsy, and their spouses. We will be analyzing data, in particular looking at the differences in the way a patient/spouse perceives the illness.
I’m also going to be conducting similar research here at Stony Brook University at the Medical Center—working with Dr. Jill Miller Horn, and Dr. Marrone — so that we can do a cross-cultural comparison at the way epilepsy is perceived in married couples. The more research I do, the more I have found it to be of real importance, combining the sociological and medical perspectives together. It’s something anyone should look into who’s interested in medicine because so much of treating a patient relies on understanding the sociological background.
Are you aware that the First Year reading choice this year is related to the topic of epilepsy?
I’m actually TAing-for ITS 101! The book is ‘A Spirit Catches You and You Fall Down’-about a Hmong child who has epilepsy. Reading about the cultural clash between the American way of treating epilepsy and the way the immigrant parents perceived epilepsy coincided with my research really well. It's a really fascinating book.
You mentioned that you presented at URECA in April, when you were still relatively new to your project. Did you enjoy the experience? Will you present again?
Yes – and yes! I’m really glad I presented the poster when I did. People were very interested and gave a lot of insight that I was able to build on. Even though it was preliminary, I was able to exchange ideas with people and get more insight on where to take the project further. And I hope to present a follow-up poster next April!
Do you have any advice for other students?
I would definitely say that just finding your interest, what your passion is, is so important. It may not at first be directly related to your field or profession, or coincide with what you think of as traditional research … but explore it! … Exploring different types of research expands your horizons on what research actually is — and what the practical applications are of what you’re learning. It puts you more in touch with the real world.
And the experience of doing research can lead you to new directions. For example, the research that I’m doing right now on the psychosocial effect of epilepsy got me thinking to find a way to de-stigmatize epilepsy and other socially debilitating disorders. So I had the idea to develop the “Humanology” project—working to destigmatize these illnesses through student run blogs, where students are able to translate peer reviewed literature into palatable blog posts that can be accessed to the public. Through this project, people will be able to learn more about the disorder and the stigma that shrouds it. It will bring to light the problems that people are facing, and hopefully eliminate them. I’m very excited about how it is all coming together.
Has the reception to your epilepsy project been generally favorable?
People have been incredibly receptive, especially at Stony Brook. They are very willing to help and see the importance in my project. Many times people are deprived of proper treatment not because of the lack of the treatment, but rather the social constraints of the disorder that leads them to keep it concealed.
What is your future goal?
I’m very interested in pediatric neurology. I'd like to combine the practical knowledge of sociology into medicine and be able to treat patients in a more personalized way. Hopefully I will be able to start a nonprofit organization that brings cutting edge neurology treatment to developing nations.