My little contribution to people with type 1 diabetes
The T1D community allowed me to help many fellow T1Ds in the country. I help by dedicating my time and share knowledge regarding diabetes management. I enjoy teaching DSME(diabetes self-management education) to people with T1D and I also learned a great deal by guiding T1Ds. I feel great and very happy when the T1 families can comfortably eat, sleep, maintain constant normal blood sugars without many fluctuations, feel confident in their diabetes management, and lead a peaceful life after learning DSME.
My guiding steps
- I Listen to their diagnosis story even though it is similar for everyone. It is important because our interest in listening to them and our response makes them comfortable. Another important thing we should keep in mind is, we are probably the first people that they might be sharing their diagnosis story with. So being an educator, I give full attention to their story.
- I make them understand the facts of T1D by debunking the myths. It leads to acceptance of the condition and they show interest in learning more.
- I teach them Diabetes basics such as understanding low glucose symptoms and treating them with sufficient glucose, injection site rotation, the importance of monitoring blood sugars, etc.
- I Make them understand how the basal-bolus method works and how to prevent hypos and hypers (as much as we can) on basal-bolus by analyzing insulin working mechanism.
My journey with Sweet souls
I am part of the sweet souls foundation (registered) Hyderabad. We are a volunteer support group and working for people with T1D both in Andhra and Telangana.
I and Divya conduct events every month with the help of our friends Nalini, Ramesh, Sirisha, Varun, etc in Hyderabad. I and Divya learn, discuss diabetes and enjoy organizing the events with different ideas every time. I, Varun, and Divya organized the Sweet Souls event in Vijayawada also, Lithika’s family hosted us and we had a great welcome and time.
In the pandemic days, we from Sweet Souls have been conducting online Events for different age groups such as children, teenage children, adults, and parents of T1s. We also collaborated with DAY (diabetes awareness and you) and organized a session on “doctor-patient relation” with the help of Miss Kiran, CDE, and Dr. Debasis Basu.
We found some Challenges in conducting the events; Because of social stigma, T1D adults participation needs to be improved. another big challenge is the unavailability of proper DMSE (diabetes self-management education) in Telugu language. We want to reach all T1Ds in Andhra and Telangana and educate as many as we can.
Participated T1D events
T1D gave me an opportunity to travel to so many places in the country. My participation in many events taught me so many methods and techniques in conducting the events for T1Ds in our Sweet Souls. I along with Prashanth, Sreedhar, Anirudh and Spandana participated in many T1D events in the country. We all explored different places and enjoyed tasty foods (by adjusting bolus properly)
“Diabetes cannot stop from traveling”
Blue Circle Diabetes Foundation
I am also part of the Blue Circle diabetes foundation. I Participated in many events in Pune and made videos in video campaigns. I am also a volunteer on the “blue circle buddy project”. If any person with diabetes wants to seek help in managing diabetes and wishes to talk to me, we can connect here.
A good campaign video
YLDI, Ahmedabad
I participated in YLDI (young leaders diabetes India) Ahmedabad conference. I had the opportunity to meet many T1 leaders there and I made lovely friends there.
T1D foundation of India
Type 1Diabetes foundation of India, an umbrella organization where many T1D support groups come together for good cause is launched on 1st March 2020. I am very happy to see all the support groups and organizations together forming the T1D foundation of India.
Diabetes India youth in action
I participated in DIYA 2019 winter camp and enjoyed my time with Delhi T1D friends. We had an unforgettable campfire event where I experienced 2 degrees C cold temperature in Delhi for the first time in my life. I also participated in the DIYA conference in Bangalore and gave a presentation on an interesting topic “significance of support group for people with T1D” on 1st December 2019.
JDF, Mumbai
I was so happy to meet Aaba at the camp. I loved the camp, especially their counseling on diabetes treatment, different activities in providing diabetes education, etc.
My message to people with T1D
- Having a supportive doctor is a must for a person with type 1 diabetes. Find a doctor who treats you well and who can allocate sufficient time to listen to your concerns.
- People with T1D and parents having children with T1D should give time for learning and read regarding diabetes management. It is a lot of information available online and it is our responsibility to choose the correct information. Acquire knowledge from official sources and attend events related to T1D by making yourselves available. The primary motive of reading should be acquiring the right knowledge of diabetes treatment, technology and diet but should not be solely limited to the search for a cure. There are several false promises and caution should be practiced to not fall into the trap of fraudsters who claim to give a cure to T1D.
- Having good knowledge of diabetes management enables us to adjust to the circumstances. I spent covid19 pandemic days in my native place and I did not have access to my regular diabetes supplies during the lockdown period. Still, I managed my blood sugars well using actrapid and insulatard insulins. Check your blood sugars regularly. Your insulin administration, food intake, activity and many other factors depend on blood sugars. This is the first step towards successful diabetes management.
- “The more you check your sugars, the more you learn and better your diabetes management will be.”
- Support groups are very important for people with T1D as diabetes is physically and mentally overwhelming sometimes. There are a lot of support groups for people with T1D nowadays. Being part of support groups and having friends with T1D helps you to learn and share
- Teach fellow T1Ds and parents having children with type 1 diabetes. In the process, you both will benefit. Knowledge does not reduce with sharing but it multiplies.
I came out of diabetes-related depression only after connecting with other T1Ds and support groups.“Love your diabetes, it loves you back.”
Appeal to government
There are many people with type 1 diabetes who are not able to afford their diabetes basic supplies such as insulin, Glucose strips, different lab tests, etc. My kind request to both all state and central governments: If our Government can provide basic diabetes supplies to people with diabetes, especially for people from lower economic backgrounds, there are many T1 leaders like me, who are ready to give diabetes education to all the people with diabetes.
Recently I sat with T1D children who are from low economic backgrounds to educate on diabetes, I could not suggest/speak out anything and felt helpless as they do not have resources. Their blood sugars are constantly high and having higher HBA1C levels.
Conclusion
I am glad to have 2 lovely challenges as they are making me special and showing the way to me to think in different ways. 26 years of my life gave me so many memories to remember and cherish. I was overwhelmed and felt great to celebrate a wonderful virtual birthday from so many of my T1 friends and parents having children with T1D. The love and affection from them always encourage me to do much more good for people with T1D. 2 of my friends i.e. Prashanth and Rana from Chennai gave me the beautiful title “Ray of Hope” on my last birthday.
Honestly speaking, living with T1D is challenging but it is much more interesting compared to my vision challenge because a T1D must be a little extra attentive all the time to manage glucose fluctuations. I am not saying T1D is difficult, I’m just highlighting the positive side of it. T1D encouraged me to have an interdisciplinary approach. Even though I am from a social science background, it gave me an opportunity to explore more into health sciences. If I get a good opportunity, I want to start my carrier as a diabetes educator someday.
“The more challenges you have, the more you learn”
As I received a lot from society, I want to give back to society in whichever way I can. It is generally believed that people with disabilities always need support, I want to prove people with disabilities can also contribute to society like everyone else.