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Jazz Sethi is a spunky woman who thrives despite having Type 1 Diabetes, and helps others like her through her Diabesties Foundation.
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 that condition lead better lives.
The 28-year-old professional dancer, choreographer, theatre artist and author based in Ahmedabad is the founder-director of Diabesties Foundation, set up in 2018.
Diabesties Foundation is a not-for-profit that aims to make people with Type 1 Diabetes (earlier 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 that she is privileged to be able to use technology to make her life much easier and be in 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 is a serious problem,” she says.
Jazz has written about her attitude to her condition: “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.”
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 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, auto-immune condition and that I would be on insulin for life. Our family was in a state of shock,” says Jazz.
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.
“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 Sethi.
Diabesties Foundation does not focus on Type 2 Diabetes because Jazz believes that condition gets sufficient attention and support. “For Type 1 diabetics, life changes overnight, there is overwhelming stigma, misinformation, zero support, and 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 Foundation 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 have the condition. “We want people with the lens of lived experience,” says Jazz.
Soon after the first DiaMeet in 2018, Diabesties Foundation was formally registered. Its activities are aimed to address the gaps in the healthcare system pertaining to Type 1 Diabetes.
“For instance, doctors don’t have time to explain to persons 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) have 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 are to help people identify symptoms, reduce risks and create a more inclusive environment, she explains.
Access includes providing access to insulin and test strips to 500 children from poor families in four states with support from the pharma industry.
“This is our Project Mishti. We are now 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. Separate resources are available for parents as well.
Interestingly, the foundation also publishes a thick comic book called Bluelight. Volume 1, launched in 2020 was on how to bust myths and stigma about Type 1 Diabetes. Volume 2 is just out and the plan is to bring out five volumes.
Diabesties also has a Caregiver’s Council where parents and partners of persons with Type 1 Diabetes get together as a support group. Parents share healthy tiffin ideas or how to manage Type 1 Diabetes in school, among other things.
Whenever possible, Jazz shows her journey with Type 1 Diabetes through dance which is the best medium for storytelling for her. Not only has this spunky young woman handled a hard to manage, incurable condition herself, she has reached out to help others too.
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Image source: YouTube
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