Jazz Sethi – Spreading awareness about type 1 diabetes

Jazz Sethi is not just the digital face of the type 1 diabetes community in India but also a performance artist, writer a­­­­­­nd director of the Diabesties Foundation. She was just 13 years old when she was diagnosed with type 1 diabetes. Let’s get to know more about her journey from ‘why me’ to slowly and steadily transforming into a lens of ‘what if’.

There is a lack of awareness about type 1 diabetes in India. So, based on your experience, would you like to share some insights regarding type 1 diabetes?

Jazz Sethi: It’s absolutely right. There is a lack of awareness all over the world, but more so in India. Diabetes is a very generic word. In India, diabetes is known as ‘sugar ki bimari‘. There are not just one but several types of diabetes.

However, the most prominent two are type 1 and type 2 diabetes. We hear more discussions about type 2 diabetes among the public and the media, because it happens after a certain age as it is a lifestyle disorder. It develops when the pancreas makes less insulin than the body needs, and the body cells stop responding to insulin. Insulin is an extremely important hormone without which humans cannot survive. It regulates the glucose we get from the food we eat into energy for our body. Type 2 diabetes can be easily managed with a lot of work. And in some cases, you don’t even need medication. You just have to make a few diet and lifestyle changes.

Type 1 diabetes is an autoimmune condition. In this, the body mistakenly destroys the insulin-producing beta cells of the pancreas. People like me who suffer from type 1 diabetes are insulin deficient. Our bodies do not produce insulin. So, we need to take insulin externally to survive. We need to take it through injections because insulin does not come in a pill format. It’s only injectable.

Multiple times a day, we need to check our sugars constantly, we need to carb count for the meals, we need to take insulin according to what we eat. This type of diabetes is mostly juvenile, which means it happens more in kids, but it can happen at any age and you don’t need any family history for it to happen to you. I was diagnosed when I was 13 and I am living with type 1 diabetes since then.

Tell us about your experience of dealing with type 1 diabetes.

Jazz Sethi: My life completely changed overnight when I got diagnosed with type 1 diabetes. I was experiencing symptoms that we call the 4 T’s; tired, thirsty, thinner and toilet. I started losing a lot of weight, getting very thirsty and going to pee a lot. This continued for a week or two. When my parents realised the changes in me, they immediately called up our family doctor. He asked me to get my urine and blood tests. When the results came in, he told us that my sugar levels had gone up to 900 or 1000.

My parents rushed me to the hospital, where my treatment began. The realisation of the first shift of my reality was difficult. I could not eat chocolate or sweets that I liked randomly. I had to constantly check my sugar levels and take insulin to balance it. And it does take a toll on the body, physically and mentally. Initially, I used to think why did this happen to me. However, now I feel that it made me stronger and more resilient. With peer and community support, I think you can live a very long and healthy life with the condition.

How you deal with the life-threatening condition of diabetic ketoacidosis (DKA)?

Jazz Sethi: Due to delay in the diagnosis of type 1 diabetes, people get diabetic ketoacidosis (DKA). It can be a very life-threatening condition. Due to the absence of insulin in the body, all the sugar that we eat stays in our bloodstream. As a result, our cells starve for energy. When the body needs energy, it starts breaking down fat for energy. In this process, it releases ketone bodies. And if it gets very high you can go into a coma or in some cases, even die.

In DKA, you feel tired and lethargic all the time. You have a very fruity-smelling breath because there’s so much glucose in your blood. You are constantly in the bathroom. You start getting cramps. You get dehydrated. If the condition gets to a point where a person starts experiencing abdominal pain and vomiting, they should immediately go to the hospital. So why does DKA happen? It happens because you’ve stopped insulin.

So that’s one of the key metrics that we keep telling our kids struggling with type 1 diabetes is that they should never stop their insulin. No matter what, they should be vigilant. I think the problem is also that a lot of people are not aware that something like this can happen. This is why it is important to educate yourself and know the signs of DKA. So, in case you ever get it, you know how to deal and act quickly in time of emergency.

How does your non-profit organisation, the Diabetes Foundation benefit people suffering from type 1 diabetes?

Jazz Sethi: When I was diagnosed with type 1 diabetes as a curious child, I turned to YouTube to learn more about it. Unfortunately, all I found were lengthy, unengaging lectures that didn’t capture my interest as a 13-year-old. It was frustrating to keep encountering these obstacles in my quest for knowledge.

There were two main reasons why I started my organisation for type 1 diabetes. Firstly, I had never known anyone of my age who also had the condition, which made me feel isolated and alone. It wasn’t until I started my organisation that I met someone else with type 1 diabetes, which motivated me to create a community for others like us. Secondly, my initial idea was to create a YouTube channel that was both entertaining and informative for kids living with the condition. I wanted to make sure that young people with type 1 diabetes had access to a resource that was engaging and colourful, so they could learn about their condition in a fun way. These two factors drove me to start my organisation, and I’m proud of the community we’ve built.

Once we started the YouTube channel, we received an overwhelming amount of engagement and positive feedback. This encouraged us to organise our first-ever ‘DiaMeet’, where we could connect with other people who have type 1 diabetes. I contacted my doctor and asked for a list of their patients with type 1 diabetes and personally reached out to around 30-40 people. I called each person on the list to introduce myself and invite them to the meet. And so, Diabesties was born.

At ‘Diabesties’, we aim to support all stakeholders in type 1 diabetes management by creating a community where everyone feels heard, loved, supported, and celebrated. Our mission is to help people with type 1 diabetes thrive. We have done this till now, and we are committed to expanding our impact in the coming years.

Over the past five years, we have expanded our outreach to include caregivers, healthcare professionals, rural communities, and education programs. We are proud to offer access programs that help people living with type 1 diabetes get the resources they need to live their lives to the fullest. The journey has been rewarding and we are excited to continue growing our community and helping those with type 1 diabetes thrive.

How do people from rural areas communicate or get connected with this initiative?

Jazz Sethi: We prioritise outreach efforts to reach people who might not have access to resources otherwise, especially those from below-poverty line segments. We currently support around 400 children with insulin, education, and access to testing supplies. To get in touch with us, the best way is through our 24/7 helpline. We have also partnered with general practitioners in rural areas to expand our reach and ensure that everyone who needs our help can access it.

To reach people in rural areas, we have established partnerships with general practitioners who refer patients with type 1 diabetes to us. We have also set up a helpline and WhatsApp group to make it easier for people to get in touch with us. While we have made progress in expanding our reach, we know there is still much work to be done. We estimate that we have only reached about 20% of rural India, given the size of the population living in those areas. Social media, particularly Instagram, has also been an important tool for us to communicate and connect with people, including those in rural areas who may not have access to other resources.

There is a lack of digital literacy in the rural areas. Some people do not even own mobile phones or have access to the internet. How do you bridge the gap and make them aware of your initiative?

Jazz Sethi: We recognise that there is still much work to be done in expanding our reach to people in rural areas. However, as I have already said, we have partnerships with general practitioners who are based in such areas and are familiar with our foundation. They can connect patients to us either through a phone call or by providing them with educative materials.

We have translated a significant amount of our educational materials into regional languages. Additionally, we have developed distinct educational materials for our rural and urban populations based on the feedback we received from a focus group. We learned that rural kids prefer actual photographs rather than clip arts or drawings, while urban kids do not mind clip arts.

We have put in a lot of effort to make sure our programs and materials are effective. We have conducted prototyping and gathered feedback from focus groups to ensure that they meet the needs of our target audience. We value their suggestions and have incorporated them into our programs. This has helped us to improve the quality of our services and to move forward in a more informed way.

You are the first woman in India to get a ‘Do it yourself artificial pancreas’. What is that?

Jazz Sethi: A DIY APS, or a do-it-yourself artificial pancreas system, is a technological system that involves hacking into the insulin pump and continuous glucose monitor to make them communicate with each other through a radio frequency device. This system requires the use of an insulin pump, a continuous glucose monitor, and a phone. There have been misunderstandings about it being a surgical procedure which it is not.

I wear an insulin pump and a CGM to manage my blood sugar levels. The pump automatically delivers more insulin when my sugar is going up and suspends insulin delivery when my sugar is going down. This is all part of a technological system called a DIY APS, or do-it-yourself artificial pancreas system, where my phone, CGM, and pump communicate with each other and make decisions based on algorithms. These algorithms take into account my insulin sensitivity factor and insulin to carb ratio to make personalised decisions about my insulin dosing.

The DIY APS involves adding pre-set values into the system, which allows the devices to communicate with each other and make decisions based on algorithms. It’s important to note that the app used for this system is not FDA approved, hence the term DIY. The user must create and code their own app instead of downloading it from an app store.

If anyone is interested in trying out the DIY APS and they have type 1 diabetes, they can contact us. We can guide and assist them in setting up the system.

What would be your advice to patients, especially children and their parents on living with type 1 diabetes?

Jazz Sethi: One important piece of advice would be to focus on educating yourself. Education is empowering, and the more you know about your condition, the better equipped you’ll be to handle the challenges that come with it. However, it’s important to seek out reliable sources of information from people who are living with the condition and not just rely on information from the internet or any unreliable sources.

Another crucial factor is acceptance. Many people face denial when they are first diagnosed, but the sooner you accept your condition, the better off you’ll be in the long run. Acceptance also makes it easier to start educating yourself about your condition.

Lastly, peer support is essential. Making friends who understand your life and your experiences can be very beneficial. It’s important to have a support system of people who understand what a hypo is, how it feels to take an injection, and the challenges that come with living with a chronic condition. This advice applies not only to children with the condition, but also to the parents and caregivers who need support and understanding as well. By building a community of care and support, everyone can benefit from shared experiences and successes.

In a country like India, several myths and taboo exist around treating type 1 diabetes. How do you think we can overcome them?

Jazz Sethi: Alternative treatments are prevalent in India, making it challenging to navigate the misinformation surrounding diabetes. Those who spread false information often use vulnerability and hope as clickbait, taking advantage of parents who are desperate to find a cure for their children. This can be harmful and is a big problem that needs to be addressed. It’s important to call out the stigma and misinformation and have a zero-tolerance policy against it. Language also plays a significant role in healthcare, and using appropriate language when discussing diabetes can help reduce stigma.

People still come up to me and say that I got diabetes because I ate a lot of sugar, which is entirely false. Education is crucial in breaking down such myths and misinformation surrounding diabetes. We need to take action against people who claim things that are not scientifically possible.

As you have emphasised the importance of peer support and education in dealing with this condition, how can someone associate with your foundation and attend ‘Diameets’?

Jazz Sethi: If you want to get in touch with us, it’s very easy! You can find us on Facebook or Instagram at Diabesties 1. We also have a helpline number available. We post all our events and projects on our social media pages, and you can visit our website, Diabesties Foundation, to learn more, communicate with us, and get involved. You don’t need any links or registrations to attend our events; just show up, meet people who are like you, and celebrate the Blue Heart Club together.

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