Diagnosed With Type 1 Diabetes at 13, This Dancer Now Helps 60000+ Patients Manage It Better

Originally reported and written in 2023. 

The positivity shines through like a beacon. It is as if Jazz Sethi has vowed that she will triumph over Type 1 Diabetes, a condition she was diagnosed with when she was 13 years old. And she is determined to help other children and youngsters with the condition lead better lives.

The 31-year-old professional dancer, choreographer, theatre artist and author based in Ahmedabad is the founder-director of the Diabesties Foundation, set up in 2018. Diabesties is a not-for-profit that aims to make people with Type 1 Diabetes (formerly called Juvenile Diabetes) feel heard, understood, loved, supported and celebrated.

What started as a YouTube channel and regular meet-ups of persons with Type 1 Diabetes has turned into a multi-pronged programme with awareness tours, educational material, one-on-one sessions, advocacy and access.

The daughter of billiards legend Geet Sethi and prominent educationist Kiran Bir Sethi, Jazz says she is privileged that she can use technology to make her life much easier and be in the best possible health. “I have an insulin pump and a CGM (Continuous Glucose Monitor) attached to my body. They work in tandem to regulate insulin delivery. However, while technology is the way forward for Type 1 diabetics, access and affordability to such devices are a serious problem,” she says.

Reflecting on life with Type 1 Diabetes, Jazz says, “What is needed for a good quality of life is not just knowing how to stay alive, but how to live — and thrive — with Type 1 Diabetes.”

The day a sudden diagnosis changed her life

Jazz relates her own experience of being diagnosed.

“I was 13 years old. We were preparing for a football tournament at school. In one week, I lost 7 kg. I was also drinking a lot of water. My parents were alarmed at my sudden weight loss and took me to our family doctor. He suggested blood and urine tests. When our doctor got the results, he told my parents to rush me to the hospital. My sugar was 1050 mg/dL, which is extremely high. I was in the ICU for three days.”

“Somehow, I was naive enough at 13 to believe that once I was out of hospital, I would be cured. It came as a jolt to me when the doctor told me that I had Type 1 Diabetes, an incurable autoimmune condition and that I would be on insulin for life. Our family was in a state of shock,” says Jazz.

Two things struck Jazz. One, she felt the absence of information about her condition suitable for children. Two, she did not meet another person with Type 1 Diabetes for many years after her diagnosis.

To address the gap in information, she decided to start a peppy YouTube channel to build awareness about Type 1 Diabetes in a fun and engaging way.

To meet others with the condition, she reached out to 25–30 other diabetics through her doctor’s contacts. The plan was to start a community. DiaMeets were held for Type 1 diabetics to meet, bond and share their experiences.

How small meet-ups began bringing people together

“I was surprised that 25 people turned up for the first meet in Ahmedabad. Since this is a lesser-known condition which is mostly diagnosed in childhood and requires regular, expensive insulin injections, there is a great deal of stigma attached to it.

We have around 8 lakh registered Type 1 diabetics in India. That is a conservative estimate. Shockingly, we also have 9 lakh ‘missing’ Type 1 diabetics who have died before diagnosis or died because they did not get treatment on time. Many doctors in rural areas don’t know the symptoms of this condition,” says Jazz.

Diabesties does not focus on Type 2 Diabetes because Jazz believes that condition gets sufficient attention and support. “For Type 1 diabetics, their life changes overnight; there is overwhelming stigma, misinformation, zero support, and a huge financial burden on the family,” she explains.

She relates a tragic case in Bengaluru, where parents pushed their two children who had Type 1 Diabetes into the river. The parents committed suicide, too. The cause for four lives being lost was the stigma and financial burden attached to the condition.

Today, Diabesties has 32 chapters in the country and they all conduct DiaMeets thrice a year. Since 2018, over 90 DiaMeets have been held with around 7,300 participants. The foundation has 210 videos on YouTube with 6.74 lakh viewers till now.

“Behind the statistics are the stories. We have teenagers tell us that they felt much less alone after attending a DiaMeet. A girl who was very depressed because she had Type 1 Diabetes was contemplating suicide. She told us that Diabesties saved her life.”

The foundation has 50 employees who either have Type 1 Diabetes or have a child, partner or relative who has the condition.

“We want people with the lens of lived experience,” says Jazz.

Turning lived experience into support for others

Soon after the first DiaMeet in 2018, Diabesties was formally registered. Its activities are aimed at addressing the gaps in the healthcare system pertaining to Type 1 Diabetes.

“For instance, doctors don’t have time to explain to people with Type 1 Diabetes how to live with the condition. According to data, a doctor spends 2.5 minutes with a Type 1 diabetic. In our flagship programme, Back to Basics (B2B), the average time for each online session is 48 minutes,” she says.

“In the B2B programme, we tailor-make sessions for participants. A child can schedule a one-on-one online session with a diabetes educator on any topic — say, counting carbs or exercise guidance — in a language and time slot of his or her choice.

According to research, the clinical outcomes have improved after B2B sessions — HbA1c has come down, and frequency of hypoglycaemia (episodes of very low blood sugar) has also reduced,” says an elated Jazz.

D-Tour is a national awareness programme on diabetes in general and Type 1 Diabetes in particular. The programme is conducted in schools, colleges, corporates, clubs, NGOs and housing societies.

Most people are not aware that there are not two but seven types of diabetes. D-Tour aims to help people identify symptoms, reduce risks and create a more inclusive environment, she explains.

Access includes providing insulin and test strips to children from poor families in four states with support from the pharma industry.

“This is our Project Mishti. We are also launching an ‘Economic Empowerment Ecosystem’ project by partnering with NGOs that work in the field of women’s employment. The idea is to help women work and support the insulin requirements of their children. We want to make the families self-sufficient as we cannot indefinitely support them,” explains Jazz.

Project Kiran of the Diabesties Foundation creates educational material — posters, games and instruction manuals — on Type 1 Diabetes to cater to every child’s learning style. The material is free and available online in multiple languages.

Interestingly, the foundation also publishes a thick comic book called Bluelight. Volume 1, launched in 2020, focused on busting myths and stigma around Type 1 Diabetes.

Diabesties also has a Caregiver’s Council where parents and partners of persons with Type 1 Diabetes come together as a support group.

Whenever possible, Jazz expresses her journey with Type 1 Diabetes through dance, which she believes is the most powerful medium for storytelling.

Not only has this spunky young woman learnt to live with a hard-to-manage, lifelong condition herself, she has also reached out to help thousands of others along the way.

How the community has grown over the years

Over the years, the work that began as small meet-ups among people living with Type 1 Diabetes has grown into a wider network of support and care. Through the Diabesties Foundation, she and her team have now impacted over 60,000 individuals living with Type 1 Diabetes and their caregivers across India. The organisation operates through more than 32 chapters and a 50-member team, many of whom are patients or caregivers themselves.

One of its flagship programmes, Back to Basics (B2B), has scaled considerably. The initiative has conducted 4,000+ sessions and delivered 6,000+ hours of diabetes education in 10+ languages, with research indicating improved diabetes management, lower HbA1c levels and reduced hypoglycaemia episodes among participants.

The foundation’s Project Mishti currently supports 400+ children from underserved backgrounds by providing insulin and essential diabetes supplies. Early outcomes include an average HbA1c reduction of about 1.9 percent, improved adherence to treatment and fewer school absences.

To address long-term financial challenges for families managing diabetes care, the organisation has also launched Project KABIL, which focuses on building income pathways for families, especially mothers, helping them achieve financial self-sufficiency for their children’s treatment.

Educational work has expanded through Project Kiran, which now includes game-based learning tools, visual resources and multilingual material designed for children and caregivers. 

Meanwhile, DiaMeets, the community support initiative that began with small gatherings, has grown to 500+ meetings across 40+ cities, connecting more than 5,000 participants.

Jazz has also expanded her work into healthcare innovation through Glyd Health, a person-centred diabetes care platform that focuses on real-time guidance, behaviour change and sustainable outcomes.

Her organisation now collaborates with government bodies as well. In Gujarat, a partnership with the Mehsana district administration supports around 190 children with Type 1 Diabetes through structured care models, including insulin access, CGM support, quarterly camps and the development of a specialised centre for care.

The foundation’s awareness campaigns continue through D-Tour, which works with schools, colleges, corporates and communities to promote early diagnosis, reduce stigma and build inclusive environments.

Jazz is also currently working on developing a Stigma Severity Scale for Type 1 Diabetes in India, aimed at understanding the social barriers faced by patients and designing targeted interventions.

Her advocacy extends to global platforms through collaborations with organisations such as Breakthrough T1D and the International Diabetes Federation (IDF).

The Diabesties Foundation has also recently opened NEEV, India’s first patient-led physical centre for education and empowerment in diabetes care.

Even as her work grows in scale, Jazz continues to use dance, theatre and storytelling as tools to humanise diabetes and open conversations around chronic illness.

This article was first published on the Women’s Web platform in 2023 by Aruna Raghuram under the title, ‘This Spunky Woman Thrives With Type 1 Diabetes And Helps Others Too’.

All images courtesy Jazz Sethi

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