John W. Altizer, Priscilla, Johnny and Oyuna Delegsuren
Four to five times a day, Johnny, aged 9, pricks his finger using a glucose-monitoring device to make sure his blood sugar levels don’t get out of control. With each meal he takes an insulin injection. He’s got type 1 diabetes, previously known as insulin-dependent diabetes.
According to the World Health Organization (WHO), around 347 million people worldwide have diabetes. Today, November 14, marks World Diabetes Day, as the primary global campaign to raise awareness for such a common chronic disease.
Johnny was diagnosed in Macau’s public hospital in October last year, after a few weeks of feeling quite unhealthy. “Even early as August, Johnny was having some health problems, he lost weight, was really lethargic (…) we thought it was growth spurts, he was growing fast,” his father, John W. Altizer, recalls.
As Johnny started losing more weight, he showed a lack of energy and became thirsty all the time, so his parents resorted to a pediatrician at a local private clinic. By that point, “he had all sorts of pain and kept saying ‘my side really hurts.’ The doctor decided to check his blood sugar and it was 3, 4 times [what] it should be,” he said.
Johnny was rushed into São Januário Hospital’s emergency room that same day.
It all came down to a name of a disease we might hear too often: diabetes.
“They immediately realized what it was – although we went through a lot of disbelief. As a parent, you don’t want to believe it. A lot of doubt, you think it’s got to be something else, but at that point it can’t be anything else,” John acknowledged.
The next five days, spent at the public hospital, were probably the scariest. After going through IV therapy, and getting insulin, his body started to readjust. But Johnny would still need to adjust to what was to come: needles and frequent checks of his blood sugar levels throughout the day.
“That’s when all the ‘fun’ started. They started coming two or four times a day, prick his finger to check his blood sugar. It was really scary in the beginning for him. It took me and a nurse to hold him down, and another nurse to prick his finger. The same story with the shots later on,” his father recalls.
At the hospital, they would first use a hypodermic needle, which is far more invasive than what Johnny now uses: a glucose-monitoring device incorporated with a lancet.
After spending five days in the hospital, further adjustment would await his family at home. Looking back, his mother, Oyuna Delegsuren, says that the lack of information about diabetes was one of the greatest challenges they faced right from the beginning.
“The information they gave us was minimal. There was some paper work given out that had basic information on what to do. And the pediatrician told us of an app that we could download,” John confirms.
Oyuna recalls asking about associations or people she could talk to about the disease back at the hospital, but she was told they would only speak Chinese.
Figures on diabetes in Macau date back to 2012, according to information provided by the Health Bureau (SSM) to The Times. In 2006, the diabetes prevalence rate in Macau reached 5.3 percent. According to a statistics report from 2012, the public hospital recorded 5,579 doctor’s appointments within its diabetes service, which represented a 13 percent increase compared to 2011 and 26 percent over the number recorded in 2010.
In 2012, 14,577 people resorted to public hospital services because of diabetes. This represents a 9 percent increase over 2011 and a 15 percent increase over cases recorded in 2010.
The Health Bureau said it established a Center for Diabetes this year at São Januário Hospital, as a sub-unit under the SSM’s Patients Support Center, which provides support for diabetes patients even if referred from different health institutions. On November 9, the Commission for the Prevention and Control of Chronic Diseases organized a tour to mark World Diabetes Day around the natural park of Hac Sa, SSM said.
Unable to find an association, Oyuna and John met other families whose children have diabetes, through acquaintances. “There’s a small support group of about four families. Two Portuguese, one Chinese and one we haven’t met yet,” said John.
“It’s only when we’re on this side that we understand how important it is to have someone to listen, right from the beginning. Basically to squash your fears, because it’s really scary,” he added.
Over one year has passed since he was diagnosed. As a Grade 4 student at The International School (TIS), Johnny was fortunate enough to rely on his colleagues’ and teachers’ support – which Oyuna thinks was essential.
“It was OK for me to share my story at the school,” says Johnny, who now says that it’s not too hard living with the disease. “It’s a bit painful, sometimes [when having to check his blood sugar or take insulin shots],” he recognizes.
His teacher, Amanda Kiat, has helped the class organize a series of fundraising initiatives, including a bake sale and a tombola event. So far, they’ve raised about MOP25,000 to help the Juvenile Diabetes Research Foundation on their hunt for a cure.
“It has been a privilege to see how Johnny’s family has allowed me and the class to go on this journey with them. The class really came together as a family,” she stressed.
Ms Kiat believes that, although they’re aged between 8 and 9, they know “they can affect change through different ways.” With the fundraising activities, she recalled, kids had ownership of everything while teachers and parents acted as facilitators.
Margaux and Monte, two of Johnny’s classmates, said they felt it was important to support him, by launching initiatives such as the bake sale. “We want scientists to find a cure,” Margaux stressed.
Oyuna said school was essential in helping Johnny battle the disease. “This also helped his colleagues to better understand diabetes, and to learn that [this type of diabetes] does not come from an unhealthy lifestyle,” she said.
Oyuna from Mongolia, and John, who’s from the US, have had to study a disease that has changed their family’s daily life. Counting carbohydrates: 40 to 60 carbs for breakfast; 60 to 80 for lunch and the same later for dinner. Checking blood sugar levels. Taking insulin injections. Keeping alert at all times to spot any behavior that might indicate that his levels aren’t as they should be.
Again, they stress that information is key, and that’s why they try to keep up with all the literature available. “Without information, this can be a lot scarier. It’s scary regardless. But when you’re scared and in the dark, it makes it much worse,” said John.
Scientists: a step forward to cure type 1 diabetes
Scientists at Harvard University said they’ve taken a “tremendous step forward” in finding a cure for type 1 diabetes, the BBC reported. Type 1 diabetes is caused when our immune system destroys the cells that control blood sugar levels. A team at Harvard University used stem cells to produce hundreds of millions of the cells in the laboratory, and further tests on mice showed that that these cells could treat the disease.
The Harvard team is led by professor Doug Melton. He began the search for a cure when his son was diagnosed 23 years ago, while his daughter developed type 1 later on.
Our pancreas’s beta cells produce insulin, which bring down blood sugar levels. However, one’s immune system can sometimes turn against them by destroying the beta cells, which means the body cannot regulate its own sugar levels, leaving people with a potentially fatal disease that remains without a cure.
Type 2 diabetes is far more common, but very different since it is largely associated with an unhealthy lifestyle.
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