Riding the Diabetes Surf

Hey everyone, my name is Ben. I’m 24 years of age and I’m a surfer and a Physiotherapy student, and I was diagnosed with type 1 diabetes when I was 11.

As a competitive surfer with type 1 diabetes, good management is crucial to being able to focus on my long-term goals, upcoming contests, and training. The last thing you want to have happen is for an unexpected hypo event to take your focus away from the situation at hand entirely. But training and contests can be tricky, especially when this active lifestyle contrasts with the rest days and rest weeks I need as I complete my Physiotherapy course at university. That’s why I’ve made a point over the last few years to create and stick to some systems that I know will allow me to stay on top of my diabetes no matter the circumstance I’m in.

Eating before bed: I have found that if I stay disciplined with snacking and when I eat my main meals, I am able to keep great control over my BGLs. The main thing here is trying to have my last meal about an hour and a half before I go to bed. This is definitely something I don’t stick to 100% of the time but by doing this consistently I have found that it gives me an eight-hour window where I really don’t need to worry about my levels.

Fasting for basals: I have found by giving myself days where I may do some form of time restricted eating (typically missing breakfast and eating lunch anywhere from 12:00pm – 2:00pm) I can ensure that my basal settings are great which is another bonus as getting this right takes the stress out of wondering whether my glucose levels will be trending upwards or downwards between meals.

Consistent meals, less snacking: Now I have had a number of things that have worked for me, one of which being intermittent fasting. The reason this has worked, similar to not eating before bed, is that if my basal levels are great then I essentially have another part of the day where I don’t need to worry about my levels. Eating within a 8-10 hour window just means that I’ve got a larger percentage of my day where I’m less stressed about my levels. Now intermittent fasting can be good but the same goes for eating a great breakfast, lunch and dinner without the in-between snacks. These in-between snacks are what I’ve found typically throw things out of sorts where it might be something we see as not big enough to bolus for or may be something we grab out of a jar. 

Sure, diabetes can be very demanding, but a good way I’ve heard it explained before is to gamify the situation. Now this isn’t to say that diabetes is fun and that we should play around with it like it doesn’t matter, but with all of the technology we now have available, like being able to see the glucose trends using a CGM and being able to watch in real time how the basal and bolus doses are going, we can set some realistic short term goals for ourselves. This has been a real change in perspective for me, as we all have a long term condition, but these short term wins keep me motivated and prevent me from slipping into a rut. 

Personally, I don’t know how my life would have gone if I wasn’t diagnosed with type 1 diabetes at 11. But what I do know is that diabetes has been a strong factor in influencing me to be very health conscious. Would I have developed an interest in strength and conditioning? Or Physiotherapy? I’m so interested in learning how my body responds to different forms of exercises, different foods, stress levels whether this be in the lead-up to competition or being put on the spot through Physiotherapy placements. I like to be optimistic with my diabetes. I personally believe that these systems I have put in place so far make keeping my blood sugar within range easier and less of a hassle.

I don’t want to limit my perspective to being just a healthy diabetic. By exploring what works for me, exercising regularly and developing a real interest in health and well-being I’ve set the important goal of striving to be the healthiest human I can be.

Embracing Pregnancy with Diabetes – by Mellissa

My name is Mellissa and I am 23 years old. I have been living with type 1 diabetes for the past seven years. 

It has taken seven years for me to get to a point where I no longer am afraid of my disease. I had lived in fear for so long – fear of the number on the screen, or not waking up in the morning. I realize now that what I feared most was losing my sense of self. 

However, in 2020 my life had changed completely when I found out I was pregnant. Living with type 1 diabetes at the same time was a big shift and required a tremendous amount of adjusting. Diabetes + pregnancy was always my fear! Why!? I now realize it was because of all the stories and cautionary tales I heard and read about, but I can say now I did not have to be afraid in the same way that I first thought.

The only fear I had was going into diabetic ketoacidosis (DKA). As the months went by, my glucose fluctuated a lot, which it was hard at first. I had to get used to having another person to care for inside of me. I had to always make sure I watched what I ate and how much insulin I needed so I wouldn’t go hypoglycemia or hypoglycemic. During the second trimester, everything was going back to normal and the growth of my baby was developing great. At that point I knew that I was doing well with my diabetes and my pregnancy. 

Managing all of this during Covid-19 was hard because at first I could invite two people to come into the room with me when I went to the doctor, but then it went down to just one. At one point I had to be admitted to the hospital because of my sugars fluctuating all the time and my doctor wanted my glucose numbers to be between 4-7 mmol/L (72-126 mg/dL). I did not want to come into contact with other people while wearing the mask because it was so uncomfortable for me as I was getting short of breath fast, which I had to consider when I wanted to buy clothes and other stuff to prepare for the baby. Thankfully I was able to solve for that by ordering most of the things I needed. 

Most of my challenges occurred as I was entering my third trimester. I had high blood pressure, shortness of breath, and preeclampsia. Weeks later I was admitted to the hospital to be kept under observation. While my pregnant days were coming to an end on the 7th of September, 2020, my bouncing baby boy came at 37 weeks!

When I gave birth I had to get an emergency cesarean section because he was so big (4.3kg/9lb.8oz.) and I had diabetes among underlying issues. At that point I was all afraid and crying. I knew that this was a possibility, but my expectations were still different: I was the type to butter up and oil down my stomach for my entire pregnancy so I wouldn’t have stretch marks! It worked for the most part, but after I had the surgery I ended up with a few around my navel. However I would say they were worth it! 

Living with type 1 diabetes and being pregnant was a high risk, but knowing what I know now I would tell expecting parents in the diabetes community not to be afraid. Everyone has different experiences and bodies are different but you won’t know what to expect until you do it yourself. I had a great support system throughout my pregnancy, so I encourage other people with diabetes to build up their own communities and networks that are there to offer some really necessary support when it’s most needed. Be prepared and keep your physician’s number close so if you do have issues you can call and ask questions!

After the C-section, I was in a bit of pain and needed to take a few days to recover. While getting accustomed to my incision, I kept in mind that I did not want to walk with a slouched back despite the pain – so I made sure to walk with my back up straight as a proud mother with her big blessing. At that point I was so proud of myself and it built up my determination and brought me a lot of happiness, because I knew that I came a long way from where I started.

Diabetes Care from an Australian First Nation Perspective – by Chris Lee

Much of this is based on my own journey and in observations and conversations with family, friends, and First Nations people I’ve encountered in my professional, personal and cultural lives. I was diagnosed with type 2 diabetes back in 2014, and it’s been a difficult journey to discover what my condition was, what it was doing to my body, and how I can manage it better.

I was brought up in a family of 14 living in a 4-bedroom housing commission house in Darwin on the outskirts of the Aboriginal camp in Bagot. I grew up amidst the struggle of feeding, clothing and schooling such a tribe, and I started my career as a storyteller soon after leaving high school when I took up a traineeship at the Central Australian Aboriginal Media Association (CAAMA) in Alice Springs. I was immersed in a world of Centralian First Nations languages, people, cultural protocols, and LORE. 

Chris on the road to Pupanya in Central Australia

I was fortunate to live and work on the Pitajantjatjarra homelands in the community of Ernabella (Pukatja) working at Ernabella Video and Television (EVTV) in a language only workplace where the Aunties ruled, and everyone did what they told us to do. This was a period of intense cultural immersion and learning cultural lessons: After stints of teaching remote media students at Batchelor College and setting up the national body, I entered the criminal justice system as a youth worker at the Brisbane Youth Detention Centre. So many young, lost, mainly First Nations souls. I moved to the adult system first as a Custodial Correctional Officer and then returned as a Cultural Liaison Officer. Much of my time working the adult system was explaining documents, rules and encouraging the First Nations boys to get educated to break the cycle of offending. 

Many experienced trauma, were illiterate, and suffered from substance abuse (inhalants were the biggie at that time) and from abusive and broken homes. Life on the streets felt safe, and it was where they found a sense of family and camaraderie through other street kids. Crime seemed like almost a natural progression after dealing with food and housing insecurities and dulling childhood trauma through a substance habit, so these adolescents rotated through the juvenile justice system until they graduated to the adult system to join other incarcerated family.

I worked with a trauma-informed legal, therapeutic, and cultural support service on the Royal Commission into Institutional Responses to Child Sexual Abuse as the Queensland and Northern Territory First Nations engagement manager. I led First Nations community engagement and established a culturally safe space for First Nations survivors to give evidence to the Royal Commission. It was an absolutely traumatizing time for all involved. Throughout these positions, my main role was to digest then translate difficult and sensitive information and raise it in consultation with survivors, offenders, and suspicious clients in a way that engages them in the conversations. 

This was such an important foundation to where I’m at today.

My lived experience is the basis of my role at Diabetes Australia, where, as I said in a 2020 interview with the Melbourne School of Population and Global Health, I work to “provide an Aboriginal and Torres Strait Islander cultural lens on our range of projects, resources and policies which seek to reduce the terrible burden and impact of diabetes in Aboriginal and Torres Strait Islander people and communities.” There are many well-articulated reports and directives out there which outline many ways to provide culturally competent care by making small changes to accommodate cultural differences and be more culturally responsive. The Indigenous Allied Health Association (www.iaha.com.au) has published a fantastic report titled ‘Cultural Responsiveness in Action; An IAHA Framework’ which is incredibly informative. 

I believe it’s critical to provide the non-First Nations reader, clinician, or health professional with some understanding of the First Nations patient perspectives, in addition to offering some small changes to clinical practice which may improve the clinical experience for First Nations people and encourage greater participation in the journey. A wide range of obstacles get in the way of effective First Nations participation in the clinical experience, and it’s my goal to use my own journey to educate and empower Aboriginal and Torres Strait Islander people as well as clinicians to build stronger connections around diabetes management.

Fuelling Passions – by Shaina

Shaina Hatchell, BSN, RN, CDCES, is the author of Shia Learns and a recent Beta Change Minisode guest based in Washington, D.C.

I am a strong believer that my talents and life story are not for me. There is triumph in speaking about my life and using what some may see as my pain to fuel my passions.

My career as a CDCES nurse and now being an author of the Shia Learns series are all products of my career affirmations. When I started my personal journey of changing my life with affirmations, manifesting, and intentional living, my biggest goals were to become a certified diabetes educator and a published author. Today, I have accomplished both. 

Shia Learns is a small percent of my company, E1T1D Assembly. Each 1 Teach 1 Diabetes (E1T1D) Assembly is a company I created to be a community for people living with T1D, their allies, and educators. The E1T1D business umbrella also encompasses diabetes education programs, and a mentorship program for future BIPOC nutritionists and nurses at historically Black colleges and universities. I will also be doing freelance diabetes education for teachers/non medical staff and starting a mentorship program for RN/RD students at HBCUs to increase BIPOC educators.

Since starting my own business, I have learned that it is okay to start over. Until December 2020, I was the CEO of Product of My Affirmation, lovingly called “POMYA”. It is an oasis of stories and products geared to helping women and men on their journey to becoming the best version of themselves. I started this business after overcoming suicidal ideation. I was extremely unhappy with my life until I decided to move across the country (to Los Angeles) and turn my life into one that I wanted to live. I did this by stating daily affirmations, choosing to live intentionally, setting life goals, and working towards them day by day. I wanted to start a brand that allowed for a community to come together, find inspiration and feel uplifted while having a safe space to share their stories.

Now that I have published my first book and am in the process of publishing the second, I am working on merging POMYA’s brand initiatives with my passion of being an advocate and devoted ally to the diabetes community – inspired by my brother’s type 1 diagnosis. I decided to step away from POMYA full-time to focus on E1T1D Assembly. At the same time, self love, self care, and believing in an individual’s ability to achieve whatever it is that they want are ideas I continue to reinforce to my patients and their families as a CDCES! I am patient with myself and my brand’s growth, which has made this journey rewarding. 

I have received many personal messages from T1D siblings and people with suicidal ideation who have thanked me for my ability to share my life and family’s story. It is so important to step up as allies! We are the individuals who can bridge the gap and help better normalize diabetes conversations. Individuals living with diabetes deserve to feel normal and I will not stop until saying “I have diabetes” is normal and understood. I love speaking about both mental health and diabetes on my platforms. If being so transparent helps one person/family, then it has been worth it.

Follow @shialearns on Instagram, and check out Shai’s Minisode with Pei Yan Heng here!

Diabetes Through Art | Diabetes a través del Arte – by Andrea

In Latin America and in my country, Mexico, there is a lot of misinformation, taboos, and a general lack of education about diabetes – just as it happens around the world. Thanks to this attitude in our society, shame and silence come hand in hand for many people with a diabetes diagnosis. The situation worsens when they have suffered from stigma in their social, school, and even family environment.

As a person who has lived with diabetes for almost ten years, I know how it feels to speak out with fear of rejection just for having diabetes; for five years I went through a time of profound silence, where I wasn’t confident enough to tell someone about my condition or how I felt about it. Later, I met a huge diabetes community who supported me and gave me the confidence I needed to speak up for my diabetes. I was lucky to have found support in that community and in my loved ones, that’s why I couldn’t stop thinking about those who still lived in silence.

When I joined the International Diabetes Federation (IDF) Young Leaders in Diabetes Programme in 2019, I set myself the task of working on a project that would promote freedom of expression among people with diabetes and where they could empathize with those who felt like them.

That’s how my Instagram account Diabetes through Art was born. The name seeks to give diabetes a creative aesthetic and communicative look, proposing a different perspective toward something in life that doesn’t seem like that at first sight. The project consists of being a platform where the diabetes community, including people with diabetes, their parents, loved ones, or people in care of someone with the condition, can discover creative ways to express their vision of the world, or emotions related to diabetes, while promoting human understanding and respect alongside diabetes education.

While we still have a long way to go, nowadays Diabetes through Art has taught me that creativity is a beautiful way to break the silence and help people find better ways to manage their diabetes. I firmly believe that art it is a powerful tool that we should experience someday, especially if we live with diabetes.

My name is Andrea. I’m 21 years old and I’m an interior design student passionate about art and to give meaning to all things around me; that includes my type 1 diabetes.

Lea su postal en español:

En América Latina y en mi país, México, hay mucha desinformación, tabús y falta de educación sobre diabetes; tal como sucede en todos los rincones del mundo. Gracias a esta característica en nuestra sociedad, para muchas personas, la vergüenza y el silencio vienen de la mano con su diagnóstico de diabetes, y la situación empeora cuando han sufrido de estigma en su círculo social, escolar e incluso familiar.

Como persona que ha vivido casi diez años con diabetes, sé lo que se siente hablar con miedo a que te juzguen por tener diabetes; durante cinco años pasé una época de profundo silencio, donde no me sentía lo suficientemente segura para contarle a alguien de mi condición o cómo me sentía respecto a ella. Tiempo después, conocí una enorme comunidad de diabetes que me brindó su apoyo y me dio la confianza que necesitaba para hablar por mi diabetes. Fui afortunada de haber encontrado apoyo en esa comunidad y en mis seres queridos, por ello no podía dejar de pensar en quienes aún vivían en silencio.

Al unirme al programa “Jóvenes Líderes en Diabetes” de la Federación Internacional de Diabetes (IDF) en el 2019, me puse la tarea de trabajar en un proyecto que promoviera, la libertad de expresión de las personas con diabetes, y donde pudieran empatizar con quienes se sintieran como ellos.

Así fue como nació “Diabetes a través del arte” en Instagram, cuyo nombre viene a darle una mirada creativa, estética y comunicativa a la diabetes; una condición de vida que en primera instancia no pareciera serlo. El proyecto consiste en ser una plataforma en donde cualquier persona con diabetes, sus padres, seres queridos o personas al cuidado de alguien con la condición, descubran maneras creativas de expresar su visión del mundo o emociones relacionadas a la diabetes, mientras promueven el entendimiento humano, el respeto y la educación en diabetes.

Hoy en día “Diabetes a través del arte” me ha enseñado que la creatividad es una forma bellísima de romper el silencio y ayudar a las personas a encontrar mejores caminos para manejar su diabetes. Creo firmemente que el arte es una herramienta poderosa que deberíamos experimentar algún día, especialmente si vivimos con diabetes.

Mi nombre es Andrea, tengo 21 años, soy una estudiante de diseño de interiores apasionada por el arte y por dar significado a todas las cosas que me rodean; eso incluye mi diabetes tipo 1.

Follow Andy and her project on Instagram: @andyinblue @diabetesthroughart

Connect with the project on Facebook: Diabetes a través del Arte

(Uganda) Atina Glow Initiatives – by Anita K Ninsiima

Atina Glow Initiatives (AGI) is a public health NGO dedicated to advocating for people living with diabetes and other non-communicable diseases (NCDs) in Uganda. I started AGI in September 2019 with the aim of sustaining the livelihoods of people living with these conditions and reducing the incidence of cases. Today, AGI is a women-founded organization in line with the U.N. Sustainable Development Goal (SDG3) and a way for me to use my voice to advocate for people living with NCDs in my community. 

The challenges I faced as a type 1 diabetic for 14 years since childhood motivated me to form AGI: coping with the new lifestyle, managing my daily medications, and dealing with stigma through adolescence, secondary school, university and beyond. Because of all this, I felt I needed to make an extra effort to inspire people out there faced with some of these or even worse challenges and encourage them to live a normal happy and healthy lifestyle. In addition to living with type 1, I have lost friends and family due to NCDs like cancer, hypertension, and diabetes, and through starting the organization I can help to educate the community on control and preventive measures and how to cope with these diseases in life.

It was a shocking experience to receive the news that I have diabetes at a young age. But this didn’t stop me from studying and making it to university with the full support of family and friends. At university, I was always branded a “sickly lady” who would never make it in life, but actually that was what motivated me to stand out and establish AGI as a clear voice for people living with NCDs – which is essential for the community.

In Uganda, NCDs are common and young children and youths have had their own share of the burden. According to World Health Organization statistics, NCDs kill 41 million people each year, equivalent to about 70% of all deaths globally; three-quarters of deaths from NCDs occur in low and middle-income countries. 

Through the AGI slogan “Embracing Ample Health,” we emphasize that good health is a priority for every individual. We engage AGI members in health and development initiatives, creating a safe space and acknowledging and educating this particular group about their health rights as they relate to living with NCDs. On our Facebook page, we seek to bust myths about NCDs and advocate for government support of people living with NCDs during the COVID-19 pandemic. To reduce the burden of living with NCDs, we also advocate for accessibility to optimum healthcare for people throughout Uganda. On the AGI website I shared a personal testimony about my diabetes diagnosis, which taught me the following lessons that I wish to share with others through my work: 

1. Acceptability

2. Adoption

3. Body Discipline

4. Fighting for my body

5. To create a change

Follow Atina Glow Initiatives on Facebook and their website.

An Unexpected DiaJourney – by Ronaldo Pineda Wieselberg

There are some people who use their life problems as their best qualities. I could say that I am one of these people. Back in 1993, I was diagnosed with type 1 diabetes, and even knowing I wanted to become a physician, the topic “diabetes” was totally unknown. However, my life was turned upside-down, and back in 90’s there was very little information about diabetes. This led me to start studying about diabetes as soon as I can remember.

In 2011, when I was 18, I started a training programme called “Young Leaders in Diabetes” in ADJ Diabetes Brazil, the diabetes association which I am part of. In the same year, my then girlfriend, who also had diabetes, passed away due to a diabetic ketoacidosis caused by an infection. I was utterly shocked. This was the turning point for me, to devote my entire life to avoid this fate for anyone. The lightning struck right by my side, but I had the unique chance to change people’s lives for better.

I joined the diabetes camp counsellor’s team in the same year, a role I played until 2018, when I graduated from medical school. Being part of a diabetes camp team was quintessential to understand the needs of people with diabetes besides my own. It was important to learn how to deal with different beings who had their own dreams, fears, and ideas about the world. While in this position and as a medical student, I noticed that people with diabetes lacked information about the condition itself. Then, I started to write about diabetes, first for a website called “Diabeticool”, and soon after for my own portal, called “Arquimago da Insulina” (Insulin Archimage in Portuguese), that can be accessed in Facebook, Instagram, Twitter or www.arquimagodainsulina.com.br.

These experiences led me to a holistic comprehension of diabetes, not only as a “disease”, but as a condition that entwines mind and body and few healthcare professionals know how to deal with. It was no surprise that I wanted to become an Endocrinologist – a journey in which I am now! – but in Brazil it is possible to act as a Diabetologist shortly after the graduation, since it is not a recognized specialty here, and thus, I am doing this in my diabetes association.

My current projects are to write about diabetes for the general population, aiming for strategies to prevention and health promotion, developing educational programmes for people with diabetes in vulnerable conditions and, why not?, developing projects for health education for people with non-communicable diseases.

Read Ronaldo’s story here in Portuguese:

Uma Jornada Inesperada

Existem algumas pessoas que transformam os problemas da vida em suas melhores qualidades. Eu poderia dizer que sou uma dessas pessoas. Em 1993, fui diagnosticado com diabetes tipo 1 e, mesmo sabendo que queria ser médico, o tópico “diabetes” era totalmente desconhecido. No entanto, minha vida virou de cabeça para baixo e, nos anos 90, havia muito pouca informação sobre diabetes. Isso me levou a começar a estudar sobre o tema desde que me entendo por gente.

Em 2011, quando eu tinha 18 anos, comecei um programa de treinamento chamado “Jovens Líderes em Diabetes” na ADJ Diabetes Brasil, a associação de diabetes da qual faço parte. No mesmo ano, minha então namorada, que também tinha diabetes, faleceu devido a uma cetoacidose diabética causada por uma infecção. Fiquei totalmente chocado. Este foi o ponto de viragem para que eu dedicasse toda a minha energia para evitar este destino para qualquer outra pessoa. O raio caiu bem ao meu lado, mas tive a chance única de mudar a vida das pessoas para melhor.

Eu me juntei à equipe de monitores do acampamento de diabetes no mesmo ano, uma função que desempenhei até 2018, quando me formei na faculdade de medicina. Fazer parte de uma equipe de acampamento de diabetes foi fundamental para entender as necessidades das pessoas com diabetes além das minhas. Foi importante aprender a lidar com diferentes seres que tinham seus próprios sonhos, medos e ideias sobre o mundo. Enquanto estava nesta posição e como estudante de medicina, percebi que as pessoas com diabetes não tinham informações sobre a condição em si. Então, comecei a escrever sobre diabetes, primeiro para um site chamado “Diabeticool”, e logo depois para o meu próprio portal, chamado “Arquimago da Insulina”, que pode ser acessado no Facebook, Instagram, Twitter ou www.arquimagodainsulina.com.br.

Essas experiências me levaram a uma compreensão holística do diabetes, não apenas como uma “doença”, mas como uma condição que enlaça corpo e mente e com a qual poucos profissionais de saúde sabem lidar. Não foi nenhuma surpresa que eu quisesse me tornar um Endocrinologista – uma jornada em que estou agora! – mas no Brasil é possível atuar como Diabetologista logo após a formatura, já que não é uma especialidade reconhecida aqui e, portanto, estou fazendo isso na minha associação de diabetes.

Meus projetos atuais são escrever sobre diabetes para a população em geral, visando estratégias de prevenção e promoção da saúde, desenvolvendo programas educacionais para pessoas com diabetes em condições vulneráveis ​​e, por que não?, desenvolvendo projetos de educação em saúde para pessoas com doenças não transmissíveis.

Enhancing the Lives of People with Type 1 Diabetes in India – by the Diabetes India Youth in Action (DIYA) team

At Beta Change, we love hearing about and working with like-minded individuals and groups. In this Global Postcard, we will hear from the Diabetes India Youth in Action (DIYA) to learn about how they are providing support to young people living with type 1 diabetes in India.

What is DIYA about?

DIYA exists with a mission to enhance the lives of people living with type 1 diabetes in India. It seeks to realize its mission through education, support, collaboration, and advocacy. We at DIYA, believe in strengthening the three key pillars of building up a stronger community and patient voice. The three pillars being : 

  1. ADVOCACY – working with healthcare professionals, stakeholders, government, research agencies and organizations for bringing policy level changes for people living with type 1 diabetes.
  2. AWARENESS – Conducting various educational campaigns and programs for spreading awareness about type 1 diabetes and related issues.
  3. COMMUNITY ENGAGEMENT – Engaging and empowering people living with type 1 diabetes through conducting youth led campaigns, events, workshops and social media initiatives.


The word “DIYA” in the Hindi language symbolises a small lamp and it is usually made out of clay which is lit using oil and a cotton thread to lighten up houses in the dark. With the similar vision of enlightening lives of people from the darkness of living with the chronicity of type 1 diabetes, the team got together from different professional backgrounds. They all unanimously felt that there is an impending need for diabetes awareness, psychological support and affordable management of type 1 diabetes in India. Our efforts include raising awareness, exchanging reliable information, overcoming discrimination and supporting research on type 1 diabetes – all through a supportive community building.

Global Partnerships

It’s been three years since DIYA first started and we have successfully conducted various annual diabetes residential camps, workshops for diabetes education, school awareness drive and fun events like Type one Run. Over the years, we have partnered with Global Diabetes organizations like: Beyond Type 1, T1International, League of DiAthletes (LOD) and the International Diabetes Federation. It has been an absolute honour for our team to represent diabetes voices from India at many national and international conferences.

The long-term goal of our team is to raise awareness in India about type 1 diabetes and ensure no child dies due to lack of knowledge about self- management of the condition. We aim to ensure access and affordable healthcare to people living with type 1 diabetes in India.

Upcoming DIYA projects

With the uncertainty and anxiety driven atmosphere since the COVID 19 pandemic and nationwide lockdown in India, DIYA continued to engage the community with new projects. 

  1. DIYA Instagram Weekend Festival – inviting guest speakers with diverse talks on Diabetes and other metabolic conditions. Sessions on lived experiences and impact of the lockdown on people living with diabetes were discussed. 
  2. The Butterfly Effect – A programme to ensure the knowledge about living with type one diabetes and awareness continues to spread through wings of its trained volunteers. Monthly sessions of 10 volunteers are trained about managing T1D so they can be helping hands for others in the community. 
  3. Annual DIYA Leadership Camps – Every year DIYA members gather for a residential camp away from the daily hustle of living with T1D to feel empowered and motivated to live beyond diabetes.  
A group of people sitting on a large rock face.

Still think you are alone? Get connected to be a part of this stronger community in India.
Facebook – DIYA
Instagram – @diabetes_india_youth_in_action 
Website – http://diya.org.in 

Written by the DIYA core team: 
Dr Apoorva Gomber 
Sahil Madan 
Kartik Gera 
Chaarvi Arora 
Harsh Kohli 
Manjeet Kaur Bhatia 
Abhimanyu Kharbanda 
Devaank Singh 
Nehu Gumber 

ग्लोबल  पोस्टकार्ड – बीटा चेंज

डायिबटीज़ इंडिया यूथ इन ऐक्शन [दिया ] ऑर्गनायज़ेशन (Diabetes India Youth in Action)

  • “दिया” ऑर्गनायज़ेशन के बारे में:

भारत की गलियों  से, काफी हाउस की अनिगनत बैठकों और, ‘मधुमेह पीड़ित’ के ठप्पे के डर से खुद को उबारने के लिए “दिया” अस्तित्व में आया। ‘ डायिबटीज़ इंडिया यूथ इन ऐक्शन’ (दिया) एक गैर लाभकारी ट्रस्ट है जिसकी स्थापना कुछ उत्साही मधुमेह योद्धाओं  ने की और जैसा कि  नाम है, इन्होंने  अपने ज्ञान की रोशनी से अज्ञानता के अंधेरे को नष्ट करने के लिए तीन वर्ष पहले इस नयी सोच की नीवं रखी। ‘दिया’ ऑर्गनायज़ेशन पूरी तरह से गैर लाभकारी ढंग से टाइप 1 मधुमेह से जुड़ी नकारातमक सोच को जड़ से मिटाने के लिए प्रयासरत है। इसके लिए हम मधुमेह से पीड़ित बच्चों और उनके परिवार  के सदस्यों के लिए विशेष कार्यशालों  का आयोजन करते है जहां उन्हें डर-सहमकर अपनी परेशानी को छिपाना नही बल्कि  मजबूत इरादो  और दृढ़  संकल्प  के साथ आगे बढ़ना सिखाया जाता है ताकि एक सुदृढ़ और आत्मनिर्भर टाइप 1 समुदाय का निर्माण हो सके।

  • दिया को आरंभ करके आप सब को क्या मिला?

हिंदी भाषा में  ‘दिया ‘ शब्द  एक छोटे से दीपक का प्रतीक है जो  मिट्टी  का बना होता है जिसमें तेल भरकर, सूती धागे की बाती को जलाकर घरो में  फैले अंधकार को मिटाया जाता है।

टाइप 1 मधुमेह की चपेट में  आने के बाद बच्चों और उनके परिवारों को अपना जीवन भी अंधकारमय प्रतीत होने लगता है। इस अंधकार को मिटाकर ज्ञान की रोशनी फैलाने के उधेश्य से दिया ने विभित्र षेत्रो में  सफलतापूर्वक  कार्य  कर रहे टाइप 1 से पीड़ित लोगों की एक टीम तैयार की।

हम सबने महसूस किया कि  भारत में  टाइप 1 मधुमेह के प्रति  जागरुकता, मनोवैज्ञानिक सलाह और सस्ती सुलभ स्वास्थ्य  नीति की सख़्त ज़रूरत है। हमारे प्रयासों में, जागरूकता बढ़ाना, विश्वसनीय जानकारियों को शेर करना, टाइप 1 मधुमेह रोग़ियो  के साथ हो रहे

भेदभाव को दूर करना और इस षेत्र में  हो रहे नवीनतम अनुसंधानो  का समर्थन  करना है, और इस सब के लिए हमने एक भरोसेमंद टाइप 1 टीम तैयार की। सबने मिलकर कई सराहनीय कार्य किए जिनका विवरण आगे ि दया गया है। हमें गर्व  है कि हमने जो सोचा था, वह कर दिखाया और हमारी कोशिश जारी है।

  • आपके उदेश्य और गितिविधयां क्या है?

भारत में  टाइप 1 मधुमेहग्रस्त की अस्त वव्यस्त जीवन शैली को वापस पटरी पर लाकर उन्हें दीघारयु बनाना “दिया” का मिशन है। शिक्षा, सहायता, सहयोग एवं टाइप1 के अिधकारो की रक्षा के प्रयास द्वारा  ‘दिया’ अपने मिशन को पूरा करने की दिशा में  निरंतर अग्रसर है। हम एक सशक्त समुदाय के निर्माण और मधुमेह रोगियो की आवाज़ बनने के लिए निम्र  तीन बुनियादी स्तंभों को सशक्त कर रहे है:

1. समर्थन — टाइप 1 मधुमेह से पीडित रोगियो के हितों  की रक्षा के लिए हम स्वास्थ्य कर्मियों, हितेषियो, अनुसंधान एजेन्सी  और संगठनो के साथ मिलकर नीतिगत स्तर पर बदलाव लाने के लिए प्रयासरत है।

2. जागरूकता— टाइप 1 मधुमेह और उससे संबंधित मुद्दों के बारे में जागरूकता फैलाने के लिए विभिन्न शैषिक अभियनो और कार्यक्रमों का आयोजन करते है।

3. एकजुटता शक्तिकरण — टाइप1 मधुमेह रोगियों को एकजुट कर सशक्त बनाने के लिए युवाओ द्वारा संचालित कार्यक्रमों, कार्यशालाओं के अतिरिक्त पिकिनक ‘Winter कैम्प’ जैसे आयोजनों और सोशल मीडिया पर हर समय सहायता के लिए तैयार रहना।

  • दिया का तीन वषका कार्यकाल

इन तीन वर्षों  में ‘दिया’ ने विभित्र एक-दिवसीय और दो-दिवसीय मधुमेह शिविर, शैषिक कार्यशालाएँ  जैसे वार्षिक “Carbohydrate Counting workshop”, “स्कूल जागरूकता अभियान” के  अंतर्गत  दिल्ली के बहुत से स्कूलों में “Type one Run” जैसे बहुत कार्यकर्मों  का आयोजन सफलतापूर्वक किया है। हम गरीब अथवा गाँवों में रहने वाले बचों को इंसुलिन गलूकोमीटर, शुगर को चेक  करने की स्ट्रिप्स आदी मुफ़्त दान करते है। ‘दिया’ ने कुछ ही महीने पहले मधुमेह से पीड़ित बच्चों के लिए “Butterfly Effect” नाम से कार्यक्रम की शुरुआत की। इस ऋखला में चार कार्यक्रम किए गए।

देश में  “लॉक डाउन” की घोषणा  मधुमेह रोगियों के लिए खतरे की घंटी से कम नही थी। घोषणा होने से पहले ही हमने इंसुलिन का बड़ा स्टॉक खरीदा, कुछ केमिस्ट (chemist) को होम डिलवरी के लिए  राज़ी कीया, उनकी सूची जारी की, और लॉक डॉउन के दौरान जहां इंसुलिन उपलब्द नही थी, मुहैया कराई गई। लॉक डॉउन के दौरान घरो में कैद टाइप १ के लिए Instagram live के माध्यम से डॉक्टर, आहार, योग व अनय प्रकार के मधुमेह Experts के साथ लाइव सेशन आयोजित किया गया जिसमें सबने खुलकर सवाल पूछे और अपनी शंकाओ का समाधान किया।

इसके अतिरिक्त हमने ग्लोबल डायिबटीज़ संगठनों के साथ भागीदारी की है। जैसे — Beyond Type 1, T1International, League of DiAthletes and International Diabetes Federation बहुत  से राष्ट्रीय अथवा अंतर्रष्ट्रिय समेलन में “दिया” ने भारत की और से प्रतिनिथ्तव किया और विश्व स्थर पर भारत में मधुमेह की स्थिथि में बदलाव लाने के लिए आवाज़ उठायी है। हमारा लक्ष्य है टाइप 1 डायिबटीज़ के बारे में जागरूकता बढ़ाना और यह सुनिश्चित करना कि आवश्यक जानकारी के आभाव में कोई बच्चा अपनी जान न गंवाए। हम भारत में टाइप 1 मधुमेह रोगियों को सस्ती एवं सुलभ स्वास्थ्य सेवाएं उपलब्ध कराने के लिए हर संभव प्रयास कर रहे है। अगर आप भी मधुमेह रोगी है तो डाइअबीटीज़ के बारें में जानकारी ऐवम स्वस्थ जीवन जीने के लिए भारत की सर्वोच्च टाइप1 डायिबटीज़ ऑर्गनायज़ेशन “Diabetes India Youth in Action” (DIYA) से जुड़े।

Africa Diabetes Alliance: Empowering Advocacy in Africa – by Edith Mukantwari

Edith, co-founder of Africa Diabetes Alliance (ADA), wrote us an inspiring Global Postcard from Kampala, Uganda following our recent Minisode. Read on to learn about how ADA seeks to disarm diabetes myths daily and nurture a vibrant, engaged, informed, and empowered community of young people living with diabetes in Africa.

As a youth-led organisation, Africa Diabetes Alliance recognises the potential of the youth living with diabetes. We strive to move the needle forward in advocating for, championing, and exemplifying better diabetes care and prevention of diabetes and its related complications. Seventy-five percent of Africa’s population is under age 35 and a significant part of these are young adults with abounding energy that can be leveraged for this honourable cause. 

The majority of young people come from disadvantaged backgrounds with no opportunities to get quality education, healthcare, nutrition and well-paying jobs among others. This disadvantage is further exacerbated when they are diagnosed with type 1 diabetes or any other non-communicable disease (NCD) that severely compromises their potential. On top of this, there is a lack of access to information, mental health challenges, poverty that cripples any efforts to seek or get adequate healthcare, necessary medications, education or food, and a devastating lack of supportive systems and policies to aid us from these debilitating conditions. These challenges are quite diverse and often compounded by severe lack of funding for NCDs advocacy, research and service delivery. It is no wonder that many people living with diabetes and other NCDs in Africa are largely resigned to their fates, having little to no power to change anything.

We desperately want to do all we can to improve our lives as people living with diabetes in Africa. Advocacy is an amazing tool that’s often employed in calling for system-wide change and has had rousing success in HIV/AIDS. However, it does take a lot of resources, creativity, sacrifice and bravery. Asking people that are already suffering to take on the extra burden of advocacy, at a huge personal risk, is an uphill task in our developing nations. We seriously admire and respect all NCDs advocates who continue to take on this cause. Especially as advocacy is most effective when people living with the condition are the ones championing it.

These overwhelming circumstances do not take away our desire to better our lives, but they do significantly complicate things. We started Africa Diabetes Alliance (ADA) in 2018 as many of us struggled on our own with nowhere to turn for support or guidance. ADA provides a platform and opportunities to be heard, and come to terms with difficult, often severely compromising circumstances. Together, our efforts are magnified so they can echo and be a light for many more young people living with such difficult odds. We want others to have hope and see that it is possible to be healthy, happy, successful, whole, and fulfil our potential, even while living with diabetes.

At Africa Diabetes Alliance, we recognise that we, as people living with diabetes, are a potent and sustainable, albeit underutilised, solution to our very real challenges. We want to support people living with diabetes and other NCDs to stand up and be counted as real change makers. As our tagline says, disarming diabetes daily, says, change starts with us taking the bull by the horns and fighting back in more ways than one. We want to even the playing field so we, too, and many more in the future, can have a chance at achieving our dreams and chasing our goals.

None of us can take on this fight alone. But together, we can make a real difference – not just for ourselves, but for those that are yet to be diagnosed. We cannot afford to sit idly by and leave all the work of advocacy to our doctors, nurses, politicians and healthcare businesses. If we want things to truly change, we must join the conversation and be active participants in our own healthcare and advocacy. 

We thank our esteemed healthcare practitioners for all they do for us. In the same breath, we also urge them to inspire more patients to speak up, to teach them and empower them to do better, to encourage them to take education seriously. As a result, they can join healthcare, legal, economics and education professions that can uniquely position them to advocate better. We urge healthcare practitioners to include patients in conversations and decisions about their healthcare and to involve them in projects and training opportunities that they can actively lead. I also urge fellow people living with diabetes to do our part; to listen to instruction, to report back, to challenge ourselves to do better, to have a higher purpose and ambition for better service delivery, attend advocacy events, participate in our communities, ask questions, engage with other actors in advocacy. We need to speak up when things work out, and especially when things go terribly wrong, for so many of us can learn from one another’s stories while also creating awareness in communities.It is of utmost urgency that we join the conversation, empower ourselves and hold our leaders accountable. Our healthcare service providers are doing their part and have fought for us remarkably. But their efforts fall short if we do not do our part too. As patients, if we stand aside and leave this fight to others, we only have ourselves to blame if things continue to be gloomy. We shall continue to advocate, inspire, empower and equip people in Africa to disarm diabetes daily and we hope that more people will join us in this enormous undertaking. We cannot thank the changemakers at Beta Change enough for the opportunity to share our story in a recent Minisode and their May newsletter. Thank you and be blessed.