“Considered a Curse”—Combating Diabetes Stigma in Nagpur, India


Editor’s Notes: Life for a Child supports young people living with diabetes in some of the world’s most vulnerable communities. In addition to the story shared below, read more about their work supporting young people like Rwandan sisters Ineza and Rebeka at ToClimbAThousandHills.org.

Until 2022, there have been wide gaps in the data about the incidence and impact of type 1 diabetes across the world. According to estimates from the type 1 diabetes (T1D) Index, more than 860,000 people live with type 1 diabetes in India, but more than 902,000 additional people would still be alive today if everyone had access to a timely diagnosis, vital diabetes supplies and management education. An average young person diagnosed at age 10 will lose an estimated 45 years of healthy life. Globally, there are an estimated total of 3.86 million people that would be alive today if everyone had equitable access to diabetes healthcare and tools. Learn more at T1DIndex.org.

Jayesh Amarte is a 22-year-old man living in Nagpur, India studying to enter a Master’s Degree Program in Product Design. Jayesh also uses his talents as a public speaker to advocate for awareness about type 1 diabetes, a condition he has lived with for some time.

Through the support of Dream Trust and their partner organization Life for a Child, Jayesh has been able to access the supplies, education and care he needs. He is one of many who participated in the My Life with Diabetes:  A Global Art Competition. (Vote for your favorites HERE!)

Jayesh recently spoke with Beyond Type 1 about life in Nagpur, diabetes care in India, and the support he has received along the way of his own diabetes journey.

Beyond Type 1: Thank you for speaking with us today Jayesh! Can you start by telling us a bit about your city?

Jayesh: Thank you for the opportunity. So Nagpur is also called the Orange City, because it is the main producer of oranges, a fruit. We have a good, pollution-free environment, good people and good education facilities also. Along with that, we have adequate health facilities and in the last five years, the infrastructure has been growing as well.

Nagpur has a government medical college and hospital, so many treatments are given to the patient at minimal or zero cost. Along with that government medical hospital, we also have many private hospitals in various areas of Nagpur.

What types of insulin can be found in Nagpur? Are these provided by the government or are there any government programs?

All the kinds of insulin, like the Basaglar insulin and all the accessories related to it can be easily purchased from any medical shop in Nagpur. But it is not provided by the government at all. We have to buy it ourselves, with our money, and it is VERY expensive.

For a middle class person, insulin might be between 10 to 20 percent of their salary. And it is very difficult for the poor people.

Does the general population have access to help with their diabetes or are most people struggling to access care?

The poorer people are struggling a lot with diabetes. Often in India, the people want quick treatment for diabetes, so they search for the easiest way or the cheapest way to care for diabetes. This can create a fatal situation.

There is a need for awareness about diabetes in Nagpur, in fact, in the whole India. Along with that, the poor class is struggling a lot because they do not have economical resources to even buy food, let alone insulin for daily use.

Do you think that people with diabetes suffer from stigma where you live?

Absolutely. In the rural area or the below-poverty area, diabetes is considered a curse. If you are taking insulin, you may have to go into some private place, you won’t take it in front of everyone. And, if I’m saying to anyone that I am having diabetes, they react, saying things like:

“Whoa, really, you are quite young and you are having diabetes.”

“So how many times do you take insulin?”

“I have one solution for you that will stop your insulin.”

They want to give a shortcut method. So, yeah, you can tell that there is much need for awareness in India for diabetes, in Nagpur also.

How did you find a way to manage your diabetes?

As soon as I was diagnosed with diabetes, my doctor suggested that I go to Dr. Pendsey. And there, they explained everything to me. As soon as I entered Dr. Pendsey’s clinic, they made me comfortable and explained everything about diabetes to me.

Dr. Pendsey is an amazing man. The way he speaks, the positive vibes I get from him. Whenever you speak to him, you get much more confident, you feel much more confident and capable of solving whatever problem you’re having. So the half problem is done whenever you talk to him.

I am part of the Dream Trust which was founded by Dr. Pendsey and his wife. The heads are Dr. Sharad Pendsey, Dr. Sanket Pendsey and Seema ma’am. It is a kind of family, actually, I was in college, I was in school, but we receive support. Whatever motivation we need, self-help groups, get that from Dream Trust itself. We conduct so many activities. We have discussions about diabetes, we have games about diabetes, we express our feelings in drawings or shooting videos, and many things are done in Dream Trust. So, yeah, Dream Trust is like a happy place for me and my diabetes.

How has Life for a Child impacted your life with diabetes?

It is Life for a Child who provides us with various equipment. I got the glucometer which I needed a lot when I was in college. I was a participant in various committees, clubs and I used to do various activities in my college days, along with my studies. So, I was taking my food in proper proportion. I was taking insulin on-time in the proper proportion. Then, also I was having so many fluctuations in my blood sugar level, in my blood glucose levels.

So, at that time, our dietician Seema madam provided me with that glucometer and showed me how to use it, how to monitor, how to write up your blood sugar levels, and accordingly then modify my insulin intake. And after that, I saw a big difference. I hardly had any hypoglycemia in my college days after that. The glucometer which is provided by Life for a Child is very helpful for me, and I’m very thankful for that.

We heard that you are a public speaker. Do you advocate for diabetes? Could you tell us more about this?

Absolutely. There are so many people who are unaware of diabetes. There are many diseases like tuberculosis, typhoid, dengue, which are taught in books or in the public healthcare campaigns and everywhere. But even many of the doctors don’t know about diabetes, like what are the symptoms, how to detect it and what should be the treatment after diagnosing with diabetes. I faced that at first. I was having so many symptoms, but I couldn’t identify that it was particularly for diabetes. So I had decided to spread the awareness as much as possible on my own.

I use various platforms like public meetings. And we are having many discussions and many chit-chats in Dream Trust also about diabetes. If anyone is having this problem, so is it common or how to react to that particular thing and many other things. So, yeah, I am using my public speaking skills a lot for spreading diabetes awareness.

Click here to donate to Life for a Child so they can continue to support Dream Trust and other organizations like them around the world.

WRITTEN BY Lucía Feito Allonca de Amato, POSTED 01/18/22, UPDATED 12/11/22

Lucy has been living with type I diabetes for almost 30 years and is part of the team behind Beyond Type 1's Hispanic properties. She has a law degree and dual Spanish and Argentine nationality. She is an active part of the diabetes online community, from her blog Azúcar HADA. She is studying for a degree in psychology, is a patient expert in cardio-metabolic chronic diseases and an activist for the rights of LGBTQ+ people.