Jazz Sethi talks about how her journey of Type 1 Diabetes has made education her purpose of life
Name: Ms. Jazz Sethi
Age: 25 Years
Profession: Founder and Director of Diabesties Foundation, professional dancer and choreographer
I was diagnosed with Type 1 Diabetes when I was 13 years old. I do not remember much about my life before my diagnosis of Diabetes. I have been living with Diabetes for 11 years now. I was very active in my school days and enjoyed dancing and playing football.
I was preparing hard for a football match. During that time, I had started losing weight, was drinking a lot of water and would go to the bathroom frequently. At first, my family thought I was losing weight because of the football match practice. But then I started having frequent fever, fatigue, constant thirst, and muscle cramps. We consulted our family physician who recommended me blood tests and urine test. My reports showed that my blood sugar levels were 900 mg/dL. Upon seeing the results, he suggested to immediately rush me to a hospital. Once admitted to the hospital, my blood sugar levels were rechecked and they were 1050 mg/dL. I was immediately shifted to the intensive care unit and the consultant endocrinologist told us that I have Type 1 Diabetes.
Life after diagnosis
I was probably the only one in my school who had Type 1 Diabetes. I think the biggest changes that happened were after my diagnosis when I used to sit with my friends for lunch and they would carry certain foods in their lunch box which I was not allowed to have. I have always been blessed to have such an amazing network of people around me. My friends had stopped bringing sweets and foods that were not permitted for me and supported me in my journey. A lot of instances have happened with me during these years and they have taught me a lot about my condition. Once, I was traveling to Singapore and all my Diabetes supplies were in my carryon baggage. Since I was newly diagnosed, I forgot my Diabetes supplies bag in the flight! I rushed back in, but it made me realise that these were things I had to be very careful with. I have learned a lot about managing my health under different conditions over the years.
After my diagnosis, I thought I would have to stop dancing. What I realised over the years is that things would be different but nothing needs to be stopped. Before my diagnosis, in an 8-hour rehearsal schedule, I had to do nothing. Now, I continue with my schedule but check my blood sugar levels more often, carry extra snacks, and take breaks to avoid hypoglycaemia. So, nothing has changed but only more things have been added since my diagnosis.
Impact on family and friends
After knowing about my diagnosis, my father told me that I have Type 1 Diabetes. He had tried to lift my spirits and said that Wasim Akram, a popular cricket player, also has Diabetes. That made me feel a little better because, at that age, it was difficult for me to understand what it means to have Type 1 Diabetes. I believed that I would be in the hospital for some time and I would be healthy after my discharge. I didn’t realise then that this is going to be there with me for a lifetime. The initial few years were very difficult because of the age at which I was diagnosed; I was experiencing major hormonal changes in my body. So, in the initial period after diagnosis, I did struggle to manage my condition along with travelling. My parents used to keep their cell phones switched on at all times so that I could reach them whenever I would need. We decided to take one step at a time. Some small steps included my parents waking me up at 3:00 in the night – whether they were with me or travelling to some part of the world – to check my blood sugar levels. I had complete support from my family. My parents and I took this journey together as none of us knew what to do. My parents and my brother were always there for me whenever I needed them. My brother really helped lift my spirits and would always make me laugh any time I was in the hospital. We grew as a family with Type 1 Diabetes.
My grandmother has Type 2 Diabetes and was diagnosed long before me. She takes good care of herself and is very prompt with her medication. Initially, when I was told that I have Diabetes, I thought I have something similar to my grandmother. Slowly, I learned that our diagnoses are very different from each other. All of my family members are highly dedicated to educating and making people aware of Diabetes and how each diagnosis of Diabetes is different. Now, my grandmother and I joke about our diagnoses, compare our blood sugar levels and HbA1c and have fun. The way she has managed her health with Diabetes in all these years encourages me to take care of my health without being dependent on too many people.
My close friends have been extremely supportive of me in all these years and know what exactly I would need when my alarm indicates me of hypoglycaemia. They would stock juice and hard candy for me in case of an emergency. One time when I had my lowest blood sugar levels of all time, I had passed out in my car. My best friend and my brother then took care of me and brought me safely to my home. All of my friends have been extremely supportive of knowing the symptoms and helping me treat them. My entire dance family educated themselves and knew the drill in case I ever had an episode of hypoglycaemia in class.
My current lifestyle
New technology has made my life very easy now. Now I am on an insulin pump, a CGM and a DIY closed-loop system. I remember I had to skip an important exam once because my blood sugar levels rose to 400 mg/dL. What was life-changing for me was to know that any change in my stress levels or mood would affect my blood sugar levels. And whatever I experience can be seen in a graph.
I am a firm believer in technology, especially the DIY closed-loop technology. After using it for a significant time, I have seen a reduction in my HbA1c and an increase in my time in range. It is the closest to the physiology of a normal pancreas, also called the artificial pancreas system. After using the closed-loop system, I can say this with complete confidence that it is the future of Type 1 Diabetes. The problem however is to make it accessible to everyone. But the closed-loop system is what is going to be the closest to the natural system. I remember when I first started using the closed-loop system, I had forgotten about my Diabetes for the first couple of days.
I always carry glucose gummies and juice box with me whenever I am travelling. I have always been extremely vocal about my condition and I also ensure to keep the flight attendants informed about my condition so that they could help me, should the need arise. Now with the DIY loop technology, I get timely feedback on my hypoglycaemia and that gives me time to treat it.
I have never followed any diet. I believe that with Type 1 Diabetes, it is all about moderation. One should have a balanced diet and count carbohydrates in every meal so that he or she can adjust the insulin dose accordingly. I eat in moderation; I eat when I am hungry and I count my carbohydrate intake. I prefer eating high protein, high fibre foods and ensure to inject insulin correctly according to my meals. And I am a big believer in the “YOU DO YOU” philosophy. I never recommend any particular diet to anyone, as everyone is different. What works for me, may not work for someone else. Type 1 is a personal journey, and you discover a lot about your body and yourself going through it.
My fitness regime
As I am a dancer, I have my weekly dance sessions. I also do cardio and weight training every day. Recently, I have started doing Yoga.
My insulin regime
I was started with basal-bolus insulin when I was diagnosed with Type 1 Diabetes. After I switched to the insulin pump and the closed-loop system, the technology takes care of the insulin based on my blood sugar levels.
About Diabesties Foundation
During the first 3-4 years of my diagnosis, I was very shy to talk about my condition with my friends. Now, I am very comfortable discussing with people who are close to me about my Diabetes. Earlier, I would not talk to anyone and would keep it to myself. I didn’t want to inject myself in public. It took me 3-4 years to completely accept my condition. But now after seeing the concerns, questions and thoughts people with Diabetes have, I have become extremely vocal. I also love to interact with people about Type 1 Diabetes on social media. This is why I started the Diabetes foundation two years ago called The Diabesties Foundation.
The Diabesties Foundation is a global movement with the mission to make every person with Type 1 Diabetes feel heard, supported, loved, understood and celebrated. I did not know a single person with Type 1 Diabetes, until I started the foundation. I would seek the help of the internet where I would find a lot of material and videos that were complex and difficult to understand. As a teenager, it was difficult for me to learn about my condition with so much medical jargon. I felt the need for light-mannered, fun content, especially for children with Type 1 Diabetes which could interest and educate them at the same time.
Our mission is advocacy, awareness and access. Our team comprises of people both, with and without Type 1 Diabetes as we believe that awareness should go beyond the boundaries of people with Diabetes. We have many projects being run by the foundation. Our organisation arranges regular meets called DiaMEETs where people with Type 1 Diabetes come together to share their stories and have fun with dancing and games. We are also associated with many schools to raise awareness among the school personnel and peers. We are also associated with various charitable groups and hospitals to create different content that suits different people.
We have come up with Diabetes merchandise such as pocketbooks, comics, videos, posters and also manuals and presentations for Diabetes trainers. I am also a certified Diabetes educator, so I counsel people with Diabetes and work with them in understanding their condition and knowing how to manage it better. We are also involved with Language Matters – a mission to talk about the language used while addressing Type1 Diabetes in collaboration with the NHS in UK. I had studied at the same school run by my mother. I remember after my diagnosis; my mother conducted a workshop for students and teachers on Type 1 Diabetes. That workshop gave a chance to my friends and classmates to understand Type 1Diabetes and what needs to be done in case of an emergency. I have met many children with Type 1 Diabetes who do not tell their teachers about their condition and have fainted in the playground during the sports session and nobody knew what to do. So, I believe that it is very important to educate people on these chronic conditions especially those that can be seen in children. It also instils empathy and sensitivity among peers.
I was always passionate about dance, performance and presentation. I found my purpose after my diagnosis of Diabetes. So, my passion met my purpose when I founded the Diabesties Foundation. I think empathy is the biggest change agent in my journey. I often receive messages from across the world appreciating our work which makes us believe that our work is changing many lives. I had the constant support of my family and friends but never had a person with Diabetes who could hold my hand in my journey. Through the Diabesties Foundation, we are trying to reach people with different economic backgrounds and help them find solutions to manage their condition successfully.
Education about yourself brings personal empowerment. The more you would know about your condition, the more confident you become. Every person with Type 1 Diabetes is different. So, try out for yourself, learn what works for you and what suits you the best. As a community, we should emphasise a lot on education of every individual with Diabetes and also caregivers of people with Diabetes. My mantra is simple – Live Happily and Bolus regularly – and of course you are Type 1 of a kind!