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!

Living with T1D & Insulin Allergy – by Annelieke

Dear Beta Change, 

Do you know that song from the Miss USA pageants (“You’re one in a million” by Bosson)? Well, that’s sure how I felt when I was diagnosed with insulin allergy on top of having type 1 diabetes. 

It’s a very rare condition, with only 0.1% of insulin-requiring people also living with an allergy. (Okay, fine, that percentage makes it like 1 in a thousand instead of 1 in a million…but still.) Along with type 1 itself and having a gluten sensitivity, it sucked. To top it off, there was no information available besides some scientific papers stating it was rare. 

I learned that following my diabetes and gluten diagnoses, it helped so incredibly much to find others who were in the same situation, and see how they managed their daily lives and learn how I could obtain some of their wisdom. But now, there was nothing apart from the one A4 pamphlet the hospital gave me. Writing for me has always been a coping mechanism and I decided to share my ‘journal’ in the form of a blog, BlueGlu10, in the hope that the next person diagnosed with insulin allergy didn’t have to feel so alone and that they would know it can get better. 

I’ve been lucky, six years after my treatment and I don’t have any recurring symptoms yet. But at least if it does happen again, I now know there is a solution. Scientists still don’t completely know how it works but it’s called desensitization and basically means that you get exposed to the insulin in increasing doses in the hospital. Starting with homeopathic amounts increased to a ‘normal’ dose of insulin after a couple of days. Each time your body does not show signs of allergy you can increase the dose. Sounds simple but don’t try it at home! The despair, the lack of knowledge, the insecurities, and the big lingering question of ‘what if this treatment doesn’t help’ were a lot to cope with back then.

Since then I’ve continued writing about my so-called ‘adventures’. For a while I focused more on the gluten free aspect of living my life, whereas now I’m starting to write up my pregnancy and there are plenty of hilarious draft posts on my phone about the new-mom life in combination with diabetes and trying to keep those sticky gluten-containing fingers out of my mouth. 

As always, there’s the slight challenge of finding time and energy to write things up. Even though my blog doesn’t have a lot of followers, the ones that do read my stories are grateful, especially the fellow insulin-allergy adventurers. At the very least, my blog helps me to put my woes and sorrows in a different perspective. 

In the Netherlands there’s a children’s show (Bassie & Adriaan) with a key message to keep laughing, no matter what. I try to write my posts with dry humor and a splash of irony / self-wit so that I can try to put a semi-positive spin on my everyday life, even if nobody actually reads it (which happens with some posts.) What my blog and my social media presence does for me is to put my mishaps in a more positive light and remind me that I’m not alone, even if I’m one in a thousand. With all the negativity in the world, there’s never enough #positivethinking!


Follow Annelieke on Instagram: @BlueGlu10

Lees in het Nederlands: 

Lieve Beta Change,

Ken je dat liedje van de Miss USA beauty wedstrijden (“You’re one in a million” by Bosson)? Nou zou voelde ik me wel toen ik de diagnose insuline allergie kreeg bovenop mijn type 1 diabetes. 

Het is (gelukkig) zeer zeldzaam, maar 0.1% van de mensen die insuline nodig hebben krijgen te maken met een allergie. Vooruit, dat is natuurlijk maar 1 per duizend mensen en niet 1 per miljoen maar toch. Bovenop het al hebben van type 1 diabetes en glutensensitiviteit kon dat er óók nog wel bij! Bovendien was er maar zeer beperkt informatie over te vinden behalve wat wetenschappelijke artikelen die benoemde dat het maar zelden voorkwam. Bedankt, daar was ik inmiddels al acther.

Na mijn diagnose van zowel de diabetes als de gluten merkte ik dat het zo ongelofelijk veel hielp om met andere die in hetzelfde schuitje zaten te sparren. Zo kon ik leren van hun ervaringen en zien dat het met een beetje tijd allemaal wel goed zou komen. Nu was er behalve een A4 brochure dat het ziekenhuis mee gaf niets te vinden. Schrijven is voor mij altijd al een uitlaatklep geweest en zo besloot ik om mijn hersenspinsels met anderen te delen in de vorm van een blog, BlueGlu10. Zo hoopte ik dat er voor de volgende die hiermee gediagnosticeerd werd wél informatie te vinden was en zij niet de eenzaamheid hoefden te ervaren zoals ik dat had.

Ik heb mazzel gehad, zes jaar na mijn behandeling is het nog niet teruggekomen. Maar, mocht dat wel gebeuren weet ik nu tenminste wat er over mij heen komt én dat er een oplossing voor is. Wetenschappers weten nog steeds niet precies hoe het werkt maar het process heet desensitizatie en houdt in dat je steeds een mini beetje insuline toegediend krijgt in een oplopende dosis. Met een ziekenhuisopname wordt er begonnen met een homeopatische hoeveelheid die uiteindelijk wordt uitgebouwd naar een ‘normale’ dosis. Telkens als je lichaam geen tekenen van allergie vertoont mag je weer een ‘trede’ hoger. Het klinkt heel simpel maar probeer het toch maar niet zelf! De vertwijfeling, onwetendheid, onzekerheden en vooral die grote vraag die steeds in je achterhoofd zit ‘wat als dit óók niet helpt’ was een behoorlijke last om dagelijks mee te dragen.

Sindsdien ben ik over mijn dagelijkse ‘avonturen’ blijven schrijven. Een tijdje ging dat wat meer over het glutenvrije leven, op dit moment ben ik bezig mijn zwangerschap te verwerken en er staan al meerdere hilarische punten op mijn telefoon om uit te werken over het leven van kersverse moeder in combinatie met diabetes en al die plakkende gluten handjes uit je mond te houden.

Zoals altijd is het lastig om de tijd en energie te vinden dus ik loop wat achter. Ook al heeft mijn blog niet bijster veel volgers, degene die het lezen zijn dankbaar, vooral diegene met insuline allergie. Zelfs als niemand het zou lezen zet mijn blog op zijn allerminste mijn dagelijkse frustratie in een ander perspectief. Net zoals er in Bassie & Adriaan gezegd werd; “altijd blijven lachen”. Dus probeer ik in mijn blogs maar met humeur en een vleugje sarcasme/zelfspot mijn avonturen op te schrijven. Want met alle negativiteit in de wereld kun je niet genoeg positiviteit hebben! 


Follow Annelieke on Instagram: @BlueGlu10

I have diabetes; diabetes does not have me! – by Ian Tonge

In this global postcard, we hear from Ian who was diagnosed with diabetes when he was only two years old. Times has changed since then, and with that, diabetes management and technologies. Ian reflects on these changes and the big changes in his life that has brought him here.

My name is Ian. I am 63 years old and have type 1 diabetes, diagnosed in times very different to the one we live in today. The rigidity expected from diabetes management was unrelenting and made it easy for me to push the boundaries as a very young child. These times were also when so much was missing from any form of effective management. It often caused people with diabetes diagnosed to have a future full of the promise of more misery. Even I was at a loss to understand how I managed to avoid such a future. 

One thing was for certain; I had always been determined to go out there and not allow anything to stop me from achieving my targets. Whilst I have always respected my diabetes, I wasn’t going to let it get in the way of my ambitions. 

Following on from my last retinopathy examination, I was delighted to be informed that I had the ‘eye-profile of someone without diabetes’! The consultant involved in this examination was amazed; apparently, he had never come across such a long-standing diabetic with zero complications and issues normally associated with such!

It was at this point that I decided I needed to tell my story to the rest of the diabetes world and beyond. This was drawn from a simple additional detail that made my story ever more amazing; please allow a short explanation here:

In 1985 I was involved in an accident I was never expected to have survived, diabetic or not. How many people have you heard who survived being out of their own car and being hit head-on by a car travelling at over 80 mph? It is less than a 1 in 10 chance you will survive when hit by a car doing 40 mph (~65km/h). Imagine that. 

Besides this, I have lived a fun-filled, exciting, enjoyable and successful life to this point. All I want to do now is to show others just how simple it has been for me to have such a wonderful life. Even when most has been spent attached to my type 1 diabetes. I believe that by sharing my memoirs, I will be able to show others just what can be done!

Supporting Youth with Diabetes in Tanzania – George Kwayu

We actually first met George many years ago through a global diabetes program. Fast forward to January 2019, we’re hanging out at the Medtronic Bakken Honoree Invitation event in Hawaii! During this time, we got to share many more stories and the we heard the amazing work that George has accomplished and continues to do for youth with diabetes in Tanzania.

I was diagnosed with Type 1 Diabetes Mellitus (T1DM) in 1999 and have been on Insulin therapy since I was 4 years old. I take insulin four times daily, and regular blood glucose monitoring, along with a healthy diet and regular physical exercise. 

I was inspired to help other children and adolescents in 2010 after facing many challenges in my own life, such as stigma at school and other family problems. To live with T1DM in a developing country such as Tanzania is a major challenge. Communities are often not aware about diabetes and assume this is a condition which develops in older people as a result of the ageing process. I therefore, made it my aim to improve the life of others with T1DM by providing education to schools and the community at large. This was undertaken through visiting many T1DM clinics throughout Tanzania, making use of Mass Media such as Television, radio, newspaper articles, social networks such as WhatsApp Groups, Facebook and Instagram.

The drivers that led me to set up this project came through the stigma and isolation faced by all T1DM young people in Tanzania because of lack of knowledge in the community. In 2012 the Tanzania Diabetes Youth Alliance (TDYA) was established with the following objectives:

  • Spread information throughout Tanzania about children and adolescents with T1DM
  • Empower T1DM young people to live and have a voice in our government and society
  • Teach about T1DM to all schools throughout Tanzania and provide literature on T1DM for all heads of schools and teachers 
  • Provide counselling and peer to peer education centers
  • Establish T1DM leaders in every T1DM clinic to work alongside medical staff

Since 2012 when the Tanzanian Diabetes Youth Alliance (TDYA) was established, we now have TDYA branches at 34 T1DM clinics where we collaborate with health care providers around the country. Youth leaders, male and female, a Chairperson, a Secretary and Responsible parent have all been selected at each clinic. The function of those leaders and responsible parents will be to conduct peer to peer education, counselling, and raise funds for T1DM camps and activities.

I established the (TDYA) WhatsApp group in 2014, which is used to provide T1DM education and counselling. By connecting our youth with health care providers such as Doctors and Sisters in charge of the clinics and officials from the Tanzania Ministry of Health and the Medical Store Department (MSD), T1DM youth have a platform to present their challenges both medically and socially. TDYA WhatsApp group currently has more than 200 participants. Newly diagnosed children and their caretakers along with adolescents with T1DM, face major challenges. To be part of this WhatsApp group and to be in regular contact with others who have experience in T1DM is proving to be of great value. Facebook and Instagram pages are also provide another means to inspire and give encouragement.

Recently at Muhimbili National Hospital, the main referral hospital in Tanzania, permission has been given to establish a Counselling Center which is now in the process of being renovated. This will provide daily counselling for T1DM youth along with caretakers and parents with young T1DM children. T1DM graduates, medical staff and trained peer to peer personnel will be involved in this activity. If successful it can be run across the country.

In the next five years, I would like to see Tanzanian youth with T1DM have a strong voice in our community and be empowered by the Government in Health Care, for example, requesting that TDYA be represented at all stakeholder meetings concerned with diabetes. As a Leader of the youth living with T1DM, my dream is to see myself and all children and youth throughout the developing world, to be given respect and treated as any other young person and to be able to achieve their goals and dreams for their lives. Young people with T1DM should become confident members of society and contribute to the workforce. No child or youth should lose hope for their future and die because of diabetes.

To follow the work that George and TDYA are doing, check out these social media channels:

Tanzania Diabetes Youth Alliance Facebook: @tdya2012

Instagram: @George_Kwayu

Twitter: @GeorgeKwayu

Diabetes and Oral Health – by Daniel Vegh

Diabetes plays a key role in oral health, especially with the health of our gums. Therefore with World Oral Health Day landing on March 20th, we caught up with our superstar friend who gets very passionate on the topic of diabetes and oral health, Daniel Vegh to see what he’s been up to.

Hi all! My name is Daniel Vegh, from Budapest, Hungary. I am 29 years old, and have been living with type 1 diabetes for 9 years now. I am working as a dental specialist in the Semmelweis University Faculty of Dentistry, where I am also leading the Diabetes-Dental Working Group. We are in close contact with the Hungarian Diabetes Association, and are helping to create an educational and prevention campaign for the oral complications related to diabetes. This topic is also my PhD thesis, which I will defend in a couple of months. In Hungary, there are approximately 750,000 people living with diabetes, and only 50,000 are living with type 1. 

I have a blog on social media called Ifjúsági Diabétesz Blog (Youth Diabetes Blog), where I am working with other amazing diabetes colleagues on several projects. One of our project is Fc. Diabeaters, which is an amateur futsal team for people with diabetes. Together, we have been playing since 2014 in several amateur leagues.

I like to represent my diabetes community in various events and stakeholder meetings. When possible, I like to attend international conferences and become informed on the newest information, which I share on my blog. In a previous international congress I was able to meet some of the founders of Beta Change, which is a great initiative helping our community.

I have a lot of friends with diabetes around the world, and I am very grateful for these amazing people. Besides these friendships, I learn a lot from them and some of these conversations helped me to start actively lobbying in Hungary in order to get access for insurance support for CGM sensors. Since then, we have written letters, had meetings, and the type 1 diabetes community has united toward this aim. Hopefully, soon we will have something to show for it! 

There are people who need to be a loud voice, and there are others who are great supporters. At the end of the day, we share the same goal: to change diabetes for the better and make our lives easier!

Sending best wishes to the Beta Change community from Budapest.

Find out more about the Youth Diabetes Blog: 
Facebook: www.facebook.com/idbhungary
instagram: @idb.hungary 

Magyarul olvasott:

Sziasztok! Végh Dániel vagyok, Budapestről. 29 éves vagyok és 9 éve vagyok 1-es típusú cukorbeteg. Fogszakorvosként dolgozom a Semmelweis Egyetem Fogorvostudományi Karán, ahol a Diabeteszes-Fogászati Munkacsoportot vezetem. Szoros kapcsolatban állunk a Magyar Diabetes Társasággal, és segítünk a cukorbetegség szájüregi szövődményeinek oktatási és megelőzési kampányának megteremtésében. Ez a téma a doktori értekezésem is, amelyet néhány hónap múlva fogok megvédeni. Magyarországon kb. 750.000 cukorbetegségben szenvedő ember él, és csak 50.000 fő 1-es típusú cukorbetegség közülük. Van egy blogom:  Ifjúsági Diabétesz Blog, ahol más projekteken is dolgozom a csodálatos cukorbeteg kollégáimmal. Az egyik projektünk az Fc. Diabeaters, ami egy amatőr futsal csapat a cukorbetegek számára, és 2014 óta folyamatosan játszunk különböző amatőr ligákban Budapesten.

Szeretem a diabétesz közösségemet különböző eseményeken képviselni, ha lehetséges, nemzetközi konferenciákra is elmegyek, hogy összegyűjtsem a legfrissebb információkat, amelyeket a blogomban megosztok.

Egy korábbi nemzetközi kongresszuson meg tudtam ismerni a Beta Change néhány tagját, ami nagyszerű kezdeményezés a közösségünk segítésére.

Sok cukorbeteg barátom van szerte a világon, és nagyon hálás vagyok ezeknek a csodálatos embereknek. A barátságok mellett sokat tanulhatok is tőlük, és különösen ezek közül néhány beszélgetés segített abban, hogy elindítsam a lobbi-tevékenységemet Magyarországon, hogy a cgm szenzorok biztosító által támogatottak legyenek. Azóta levelet írtunk a kormánynak, találkozókon vettünk részt, és az 1-es típusú cukorbeteg közösségét egységbe kovácsoltuk! Hamarosan lesz eredménye!

Vannak emberek, akiknek a hangjukat kell felemelniük, míg mások rendkívül erős támogatók a háttérből. A cél ugyanaz, a cukorbetegséget meg kell változtatnunk, hogy az élet könnyebb legyen!

Üdvözlöm a Beta Change követőit Budapestről!