January 24, 2020

Dr. Mousumi Bose Gives Talk on Rare Pediatric Diseases at Newark Beth Israel Medical Center

Photo of Dr. Mousumi Bose at Newark Beth Israel

Dr. Mousumi Bose, Assistant Professor in the Nutrition and Food Studies Department, presented to the Department of Pediatrics at Newark Beth Israel Medical Center during the Grand Rounds Lecture Series on December 18, 2019. The title of her talk was “Community-Based Approaches to Understanding the Impact of Rare Pediatric Diseases.” She presented data on her research studies with families affected by a disease called Zellweger spectrum disorder (ZSD). The purpose of these studies is to help better understand the nature of the disease, in terms of its symptoms in patients, as well as better understanding how these disorders affect the whole family, not just the patient.

Presenting at Newark Beth Israel was particularly meaningful to Dr. Bose due to her experiences with her first son, Ilan, who had a very severe form of ZSD. He was cared for during his life at Newark Beth Israel. Sadly, he passed away in 2011, and Dr. Bose had not been back to the hospital since that time. These types of rare disorders have no treatments or cures, mainly because there is not enough information to develop treatments. As a result, doctors often feel they are unable to help families in any meaningful way.

Dr. Bose’s research shows:

There are ways to gather information about these diseases by using the input of these families. She conducted survey studies with the parents of these children affected by ZSD to gather information on their symptoms. As far as she is aware, this is the largest sample size for a research study in ZSD.
There are ways to intervene with families affected by rare pediatric diseases to help improve the lives of all members, even when there are no viable treatment options. Another study she presented found that parents were deeply affected and stressed by their child’s condition, which often affected the care for their child. This suggests that if medical professionals sought to address the experience of the parent (for treatments such as stress reduction), these efforts might improve the health of the patient as well as the whole family.