In Part 1 the Caribbean Superheroes series you read about the lived experiences of children and young people with type 1 diabetes.
Jawan, 7 and Tiana, 4, who are aspiring scientists from Trinidad and Tobago shared their dislike for checking their blood sugar levels, taking their insulin, and waiting for their insulin to start working before they can eat. Their mother, Penelope, outlined her daily routine which includes checking in on them during the night and at school.
Kerro, 20, an aspiring graphic artist from Antigua and Barbuda recalled some of her classmates and general public’s curiosity about her condition and the stigma she experienced. Kerro and Xarriah, 22, race car driver fan from Barbados both agreed on the importance of supportive friends on their type 1 diabetes journey.
Given that they have to live with the condition, these superheroes are also experts on how the wider society can better support people living with diabetes. Their recommendations focus on: 1. Diabetes Education, 2. Destigmatization, 3. Prioritizing spaces and environments that support healthy children, 4. Access to Medication and devices.
Aligned with the theme for World Diabetes Day 2022, “access to diabetes education”, all the superheroes agreed that education on one of the most common conditions in the Caribbean is critical. In particular, Xarriah and Kerro think that there should be improved education around all types of diabetes – including type 1. These superheroes have been educators since their diagnosis. However, they need help. Xarriah noted,
As much as we try to educate people, there is still a lot to be learned. And a lot of people still aren’t certain and a lot of people still group together the diabetes, the types, they still group together type 1 and type 2 and I think there needs to be a lot more information about what is type 1 versus what is type 2….not just bulking them all in one place and separating them and giving them their own identities so people understand.
Kerro agreed and she shared that even though diabetes runs in her family, she wasn’t aware of type 1 until she was diagnosed. She said,
Most times I just used to think it was older people. But now I know that people are born with it, you have babies who develop it. So I just think they need to start educating more, because, as I said, a lot of people in my class, at the age of 11 didn’t even know you could get it at such a young age.
Kerro and Xarriah recommend the integration of diabetes education into primary and secondary school subjects including Health and Family Life Education, Physical Education or Science across the Caribbean. Xarriah firmly believes in this approach as she notes that school-based education would have helped her when she got diagnosed as she, like Kerro, wasn’t aware of the realities of living with type 1 diabetes,
And in the event that one person gets type 1 they have an understanding of okay, this is what is happening to my body and this is what I may have to do for the rest of my life. And this is what I might have to endure. Because I feel like I was not very well educated when I was diagnosed. I had a general idea of diabetes because people in my family have type 2 but i didn’t have the knowledge of type 1 until I got diagnosed.
Widespread education on diabetes is critical in addressing the misinformation and resulting stigma that many persons living with diabetes experience.
Kerro recalls numerous cases where she has felt like her condition was misunderstood:
I feel like diabetics are part of that group that people tend to overlook. They just say “If you’re diabetic, it is caused by sugar and if you end up in the hospital it is because you eat too much sugar. “ So essentially you’ve caused it. That is something that I have encountered myself at a hospital.
This is a common misconception with type 1 diabetes. Persons living with type 1 diabetes don’t develop the condition as a result of lifestyle choices. Type 1 diabetes is an autoimmune disease in which your body’s immune system attacks the insulin-producing beta cells in your pancreas which drastically reduces the ability of your body to produce insulin, a hormone that regulates blood sugar.
The lack of understanding of type 1 diabetes has also resulted in people treating those with the condition differently. Kerro, Xarriah and Penelope wished that people would treat children and young people living with diabetes like anyone else.
Kerro shared that, when diagnosed, “It’s not changing personality, it is not changing the person. It is not contagious. It is not going to harm you in any way – you as in the other person.”
For Penelope, she reassures her children that there is “nothing they cannot do” despite the world saying otherwise. She notes that her children are “even more amazing” as they live with diabetes.
In the absence of formal education or mass media awareness campaigns, Kerro encourages people who are curious about the condition to “just ask”.
In addition to improved education across age groups, Penelope, as a parent, highlights the need for schools to better care for children living with diabetes. She said she would value the presence of nurses, even if sporadic, on the school compound and the use of a sanitized private room to assist Jawan and Tiana with administering insulin or anything else they may need.
An effort to better care for children could also be extended to the implementation of healthy school nutrition policies to protect the school food environment. Although Penelope packs lunches for Jawan and Tiana, given their condition, she agreed that a school policy that would restrict the availability of ultra processed foods and improve the availability of fruits would be valuable. Relatedly, Penelope also noted the importance of physical activity at school but also at home. Penelope advises parents to prioritize physical activity and diversify, if possible, the kinds of activities that children do. Jawan, unlike his mom, loves to do burpees (a full body exercise that includes a pushup followed by a leap in the air) and they do them and other physical activities together. Jawan says he can do 20 burpees in 27 seconds and holds his mom accountable.
The final challenge outlined by the superheroes is access to insulin and appropriate glucose monitoring devices. Tiana said insulin gives her “super powers”, like Elsa from the movie Frozen. Children and young people need access to insulin and testing strips daily to be able to carry out their daily superhero duties.
The governments of Antigua and Barbuda, Barbados and Trinidad and Tobago provide a glucose monitoring device (GMD), insulin and testing strips but the quality of the GMD, insulin and the number of test strips provided varies.
Penelope shared her reality with trying to access what Tiana and Jawan need, “We have gotten one device per child and they provide us with the strips for the machines. I have written 2 Letters [to government] to increase the number of containers of strips for both children.” Her request, which had to be written by a doctor, was approved.
The glucose monitoring device that all the superheroes currently have requires them to prick their finger to test the sugar levels in their blood. Their dream is to be able to have access to a GMD that offers continuous glucose monitoring and does not require the user to prick themselves. Kerro painted the reality that unfortunately, “ it isn’t available here and the accessories or counterparts to it are very expensive.” She noted that the Antigua and Barbuda Diabetes Association has been lobbying to make them more widely available locally; currently each sensor costs $200 XCD and lasts 2 weeks (a total of $400 XCD a month).
But for her the Freestyle Libre would be ideal, “It’s much easier to use, and it motivates me to check my blood sugar more. It’s more convenient since I don’t have to continuously prick myself. I just put on the sensor/patch on my arm and put the monitor close to it. It’s almost like using Bluetooth to check my blood sugar”
Penelope shared similar sentiments, “I can’t afford the Libre, it would be so helpful to have access to it. It will definitely benefit my children with their lifestyle and assist me by being able to relax and not have to worry so much.”
In addition to the Freestyle Libre, Penelope said, “ I would love to have access to at least 3 different insulin, needles (suitable for children) and Glucose Gummies to help raise blood sugar when needed.
In Barbados, Xarriah was quite pleased that the insulin pen had recently been added to the drug registry. The insulin pen is an insulin delivery system that generally looks like a large pen; it uses an insulin cartridge rather than a vial, and uses disposable needles. Xarriah says it is particularly convenient because it does not have to be on ice, unlike insulin vials. With the pens being added to the list, this means that “they are available at pharmacies across the island at a significantly reduced cost. This has been a tremendous help for those who prefer the pens and may not have been able to afford them before. The Diabetes and Hypertension Association of Barbados also provides insulin pens and vials to its members for free once they are available”
The superheroes are managing their reality but their quality of life could be improved with changes from all stakeholders – policymakers and you as a reader. The superheroes are calling for Diabetes Education, Destigmatization, Prioritization of spaces and environments that support healthy children and improved access to medication and devices. So, next time you see a child or young person testing their sugar levels or taking insulin, you can be curious but also be kind. If you hear a mother, like Penelope, asking for changes to the school environment to make it healthier and easier to navigate for her children (and yours) – support her.
Diabetes Month is highlighted every November, but let us not wait until November 2023 to share Tiana, Jawan, Penelope, Kerro and Xarriah’s experiences and solutions for change. Diabetes Day is their reality, let us do what we can to cheer on and support our superheroes on their daily journey.
November is World Diabetes Awareness month and November 14th has been deemed World Diabetes Day. The date was chosen in honour of Canadian Sir Frederick Banting, who, together with Charles Best discovered insulin, 100 years ago.
Danielle Walwyn is the Advocacy Officer at the Healthy Caribbean Coalition (HCC) and helps to coordinate its youth arm, Healthy Caribbean Youth. She is also working alongside Xarriah, superhero and member of the HCC People living with NCDS Advisory Committee, to create a space for young people living with NCDS to connect. Send feedback to email@example.com