What does a 7 year old future scientist from Trinidad and Tobago, an aspiring graphic designer from Antigua and Barbuda and a race car driver fan from Barbados have in common? They all live with type 1 diabetes.
This two-part series (read Part 2 here) aims to educate Caribbean readers about diabetes, particularly type 1 diabetes (which is often misunderstood), through the lived experiences of children and youth with this condition. It details their day-to-day experiences, challenges, successes and solutions to better protect persons living with diabete – one of the most common non-communicable diseases (NCDs) in our region.
Type 1 diabetes, which is often overlooked, traditionally called childhood-onset or juvenile diabetes, occurs when the pancreas does not produce enough insulin, a hormone that regulates blood sugar. A combination of genetic and environmental factors is thought to cause the majority of Type 1 diabetes cases. At present, Type 1 diabetes cannot be prevented and although Type 1 diabetes can be diagnosed at any age it is most common in childhood and adolescence.
Jawan, 7, from Trinidad and Tobago was diagnosed at 3 years. His sister Tiana, 4, was also diagnosed at the same age.
Xarriah, 22, from Barbados, was diagnosed at age 10, the day before her 11th birthday.
Kerro, 20, from Antigua and Barbuda remembers being surrounded by frantic nurses at a school fair when she decided, out of curiosity, to get her blood sugar checked. Kerro, who was 12 when she was diagnosed, remembers the day clearly:
First thing I remember, honestly, was the frantic nurses. Everyone was frantic and I was kinda confused because I felt normal. At the time my sugar was around 382, 383. And everyone was so alarmed, they just kept checking my sugar levels over and over again because they thought there was a malfunction with the machines.
A normal blood sugar reading for children between the ages of 6-12 (before a meal) should range between 90 to 180 mg/dL (5.0 to 10.0 mmol/L). Xarriah, Jawan and Tiana also had abnormal readings.
Once diagnosed, children and young people living with type 1 diabetes and their families must navigate a new reality inclusive of blood sugar checks, taking insulin, homework, play and engaging with peers.
Both Jawan and Tiana shared that they don’t like living with the condition. When asked why, Jawan said “I don’t like taking my sugar and waiting 20 minutes to eat.” Similarly Tiana said, “I don’t like it. I don’t like taking my insulin.”
This is a sentiment that was felt by Kerro and Xarriah as well.
There are a lot of adjustments post-diagnosis. For example, 12 year old newly diagnosed Kerro hated needles but she had to face her fear when she was told she had to inject herself 5-6 times a day (excluding the finger pricks for her sugar checks). She remembers being confronted with this new reality when the nurses at the hospital taught her how to give herself insulin. She “hated it” and recalls it taking a while to get adjusted.
Given that Jawan and Tiana are still quite young, their mom Penelope often wakes up throughout the night to check their sugar levels.
At nights I stay up a few hours because I have to monitor them during the night as well because sometimes their readings are very good just before going to bed but two hours later, if you check them randomly, their levels drop and sometimes they don’t. So you don’t know where they are during the night. And so I do get up some nights, at 1am, well in the morning actually at 1am, I do a random check and sometimes I get up at 3am again. It is very unpredictable.
She also visits their school around lunch time to check in on them. The teachers, whom she is in close contact with, often alert her in the event of any issues/problems.
Although both Kerro and Xarriah recently graduated college and university, their primary and secondary school experiences as recently diagnosed children living with diabetes are easy to remember.
For Kerro, she recalls her peers’ reaction when she had to give herself insulin in class:
At the time I was in grade 6 and it was still new to everyone in the class too. They literally used to run out of the class when they saw the needle. At first I would laugh because I was like “a needle? Ya’ll are running from a needle?” but after a while I was like, why are they running? It started to feel a little lonely in a sense. Only 1 or 2 people would stay back in the class. And at the time my classroom was like 39 students.
She also had to debunk a lot of myths about diabetes while at school. She was stared at while taking insulin and peers asked a lot of questions; one student even asked her if she was taking drugs.
Xarriah also describes her secondary school classmates as being curious but accepting overall.
I have heard some people saying that their classmates tease them but I felt like my classmates were okay. They always had my back. They asked questions and I answered as much as I could but they were pretty accepting. They were very accepting, not pretty accepting, very accepting. They accepted, understood and asked questions and I answered.
In addition to managing curious classmates, children and young people living with type 1 diabetes also have to navigate how, when and what they eat at school.
Given the prevalence of unhealthy foods in schools and the desire to be extra cautious with what Jawan and Tiana eat, Penelope packs lunch for them but wishes the school environment made healthy foods more accessible.
For Xarriah, the timing of university classes, particularly the evening classes, and the ability to eat in class was a challenge as she tries to have her last meal before 9:00PM. Some lecturers allow her to eat during class but others do not.
In addition to school-specific challenges, these superheroes also spoke about dealing with the sugar ‘highs and lows’.
Kerro shared that whenever she gets the lows (low blood sugar), it feels like “you’re on edge, you’re irritated, you just don’t know what’s going on. And then I realized that when I was little I used to experience the same feeling but I didn’t know what it was. I used to feel weak and almost like trembling in a sense. But I just used to think it’s because I didn’t eat or I was tired.”
Jawan, in his few years of living with type 1 has also experienced some scary lows. Penelope recalls that he had 2 seizures which have presented very differently with varying symptoms. During his most recent seizure, he was unresponsive, fell and hit his mouth and burst his lip. It took him quite some time to remember who he was. Penelope recalls that he could hear her but he couldn’t respond. He was aware enough to eat and while she fed him he started to cry. Once he became responsive, Penelope asked him why he was crying and he said “I didn’t know if I was going to make it”.
Living with type 1 diabetes has its ups and downs as described in these real-life accounts. These children and young people have to navigate life while also managing the realities of their condition. Kerro, Xarriah and Penelope mentioned that support from their circle has been critical on their journey.
Both Kerro and Xarriah noted the value of the friendships they made in highschool which followed them into college and beyond. For Kerro, her friends supported her and would step in to answer strangers’ questions when she was too tired. Kerro even taught her friends how to give her insulin if she was ever unable to give it to herself.
Xarriah said that, like Kerro, she has friends from secondary school who “To this day, they still have my back.”
Penelope emphasized the critical role that the Diabetes Association of Trinidad and Tobago has played since the time of Jawan’s diagnosis. She speaks warmly about the community, “the love and support from the association and that type 1 [whatsapp] chat, definitely gives me a lot of support…We say this all the time, we are all in it together. Don’t ever feel like you’re alone. When we all come together, it is very emotional, we can’t help it because of the experiences we have had so far. But it really helps when we have that support.”
Children and young people living with type 1 diabetes are superheroes, there is no doubt about it.
Stay tuned for part 2 of the series where Kerro, Xarriah, Penelope, Jawan and Tiana will share the changes they want to see to better support people living with diabetes.
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 danielle.walwyn@healthycaribbean.org