“Having Type 1 diabetes feels like being a trapeze artist or having to walk a tightrope your whole life — if you swing to either extreme (too high or too low blood sugar), your life is in danger,” says 35- year-old Nupur Lalvani, now a marathon runner. Long-hauling comes easy to her, considering she has already run the obstacle course of life. Not only has Nupur lived with Type 1 diabetes since she was eight years old, she moved to Pune to see how independently she could live with this disorder and not have her family obsess over her condition. She is now helping others like her through her support group, Blue Circle Diabetes Foundation, which is among the largest patient-led communities for all types of diabetes.

So why does Nupur’s battle seem like a big deal? That’s because research says people living with Type 1 diabetes make an extra 180 health-related decisions a day than someone without it. So, from the moment she wakes up till the time her head hits the pillow, she cannot drop guard, working exactly like her pancreas would. She must inject insulin before every meal and snack, calculating the calorific value of her food and adjusting her intake. She must also jab herself when her blood sugar spikes and keep some quick eats on her person should her levels dip low, a condition called hypoglycemia. And while she does all things right, with as much mathematical precision as she can guess, she still doesn’t know when things could go wrong. Spikes could occur because of multiple reasons — food combinations, incorrect dosing, spoiled insulin, certain types of exercise, menstruation, stress, lack of adequate sleep and so on. But in general, eating low carbs and exercising regularly have helped Nupur manage her diabetes incredibly well.

THE DIAGNOSIS: THE HOUR OF RECKONING

Nupur was diagnosed when she was about to appear for her Class III final exams. “I was in Mumbai then and it was quite a shock for my family; our lives changed overnight. From eating, playing and sleeping with abandon, my family now had to measure each morsel they fed me and match it with the appropriate insulin doses to ensure my blood sugar didn’t go dangerously low or too high. We were thrown into a new normal overnight — checking sugar, injecting life- saving insulin, measuring food, tracking exercise, hormones, stress, sleep, every day. My parents had to quickly adapt to nurturing an eight-year-old child with a newly-diagnosed chronic condition while raising a one-year-old (my younger sister) and hoping that she didn’t develop diabetes too. Luckily, she hasn’t so far, ” says Nupur.

THE DAILY DRILL: INSULIN MANAGEMENT AND COSTS

Type 1 diabetics need to inject themselves with insulin 4-6 times a day and need to test sugar on a glucometer 5-7 times a day. One of the most common questions is whether they can use oral medication instead of insulin injections. “Unfortunately, the only way to ‘manage’ (because there is no cure for Type 1 diabetes today) my condition is to inject insulin multiple times a day,” says Nupur.

Type 1 diabetics need to track their sugar and take insulin multiple times a day, do a battery of routine tests every quarter and stay in touch with their treating physicians. For a non-diabetic, going out for a jog is easy — wake up, dress up, leave. Nupur would need to consider her current blood sugar, whether she had eaten a couple of hours ago, what she had eaten, when was the last time of the insulin shot, whether she should carry some glucose for low sugar, whether she needed to carry insulin in case she decided to meet friends and eat something extra.

“In many developed countries, Type 1 diabetes is classified as a disability to ensure people living with it have all the required accommodation from schools, colleges, employers and can avail of medical/cost benefits to live a healthy life with dignity, without stigma, crushing financial burden and microvascular and macrovascular complications,” says Nupur.

“While there may not be a cure on the horizon yet, there is wearable medical technology such as insulin pumps, which are computerised devices that deliver insulin to the body through a tube, and CGMs (Continuous Glucose Monitors or sensors attached to the skin to track blood sugar levels) that can help ease the load of managing the condition. However, these advancements come at a steep and direct cost to the user since there is no insurance coverage for day-to-day expenses or any government relief that covers these devices. In fact, there is no scheme that uniformly covers the costs of modern insulin, glucometers and test strips,” adds Nupur.

Insulin pumps come at a one-time cost, which is as good as buying a car, and the monthly running expenses are also higher than using insulin syringes or pens. Nupur has used an insulin pump for some years but now uses syringes to administer insulin. She does use a CGM to track her blood sugar levels 24/7. Monthly expenditure for people using pumps and CGMs could be anywhere between Rs 12,000 and 25,000. Monthly expenditure for people on injections could be anywhere between Rs 5,000 and Rs 8000.

MOVING TO PUNE: A NEW LIFE AND SUPPORT GROUP

“I completed my Bachelor’s degree in hospitality, MBA (Marketing) and even Masters in English Literature in Mumbai before moving to Pune eight years ago,” says the now certified diabetes educator, who wanted to see how she could live independently. “Living with Type 1 diabetes is a big challenge and a pain point for several families as medical emergencies can crop up any time. So far, I have not faced any major issues,” she adds.

Then she moved to Pune when she got a job in the hospitality sector. And that’s when she decided to start a support group, so that single diabetics like her could feel secure and fall back on each other. Worst of all, they have to live with stigma apart from the burden of self-management and financing. She set up the NGO Blue Circle Diabetes Foundation, which has a free diabetes and mental health helpline called the Buddy Project Helpline (available on the Blue Circle Diabetes mobile app) that is run by trained volunteers living with diabetes. These volunteers have spent over 60,000 minutes on a 1:1 basis, counselling diabetics and caregivers across the country.

“Mental health is an often ignored aspect of living with diabetes — whether you actually live with it or are a caregiver. There are no stupid questions, only ones that you didn’t ask – so we encourage our callers to ask anything, anytime and someone will always try to help. You don’t have to make every mistake yourself; you can learn from others’ experiences. Whether you’re a newly-diagnosed or a long-time sufferer, there’s a place for everyone,” says Nupur whose biggest learning in managing her diabetes has been peer support. “Learning from what others experience and collective wisdom are truly underrated. We are not replacing medical advice, we are simply sharing our experiences so that people can learn from one another as they take ownership of their health and improve their medical markers,” says she.

“We work in diabetes awareness and advocacy across India with the help of our incredible supporters and volunteers. Our Facebook community is called Diabetes Support Network India and anyone can join. I started Diabetes Support Network India on Facebook because I could not find an India-centric online diabetes support group and I know now that not only my life but the lives of thousands of other diabetics and their caregivers are better and more supported because of the group. We also won the prestigious Facebook Accelerator Programme — another validation for the work we do,” says Nupur.

Nupur and her team are able to harness digital technology and social platforms to make the lives of diabetics easier. They got a bunch of diabetic beta testers together to help create the Blue Circle Diabetes Mobile App – which is free of cost. “This is created by diabetics and for diabetics. Our app has over 32 million blood sugar records and counting, which is a testament to the amount of people that are willing and open to use tools to manage their health better,” she says. “A lot of people approach us to help them get married (this is a real problem for diabetics in the arranged marriage set-up) so we’ve also started the ‘Marriage Thread’ post on our Facebook community, Diabetes Support Network India, and have had a few couples living with diabetes get married ,” she adds.

Nupur has been a runner and her family, too, has run the Mumbai Marathon. “Dad would do the full marathon and mom and us (sister and me) used to do the dream run of 6 km. Eventually I started doing full marathons and even went on to complete the full marathon event at the Twin Cities Marathon Minneapolis,” says Nupur who led a team of four Type 1 diabetics at the Oxfam Trailwalker, successfully completing 100 km. Her walk of life will never end.

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Anuradha MascarenhasAnuradha Mascarenhas is a senior editor with The Indian Express, Pune.... read more