It's 1am and, before the alarm in Evelyn Matafonov's bedroom goes off, she is already awake. Pulling on her dressing gown, she tiptoes down the corridor to her son's bedroom.Michael, 15, is asleep, so she gently takes his index finger and pricks it with a needle. He doesn't stir as a drop of blood is quickly transferred to a special strip on a monitor she carries everywhere. Evelyn is relieved to see the blood sugar reading is normal.
But she can't relax. Next door, her 18-year-old daughter Ksenia is sleeping and so she repeats the procedure, smiling when that reading too is normal. Finally, Evelyn pads back to bed to nap for two more hours before she has to repeat the tests all over again.
Evelyn's children both have Type 1 diabetes - a disorder of the body's immune system that requires regular injections of insulin to help the body regulate its blood sugar levels. Michael was diagnosed first at the age of 9, followed a year later by Ksenia, who was 12 at the time. "We were devastated,' Evelyn, a British expat, tells Friday. "We had noticed that Michael had been very thirsty and was frequently drinking a lot of water and constantly going to the toilet. I thought it was a bladder infection. Apparently when your blood sugar is too high you're constantly thirsty, but I had no idea at the time."
Back home in Arabian Ranches, Dubai, the family were shocked by the news both children had the condition. "We had no family history and were told that our children had developed it probably after a virus attacked their system," Evelyn explains. It has been a great worry for her ever since; once, Michael's blood sugar dipped so low that he even went into hypoglycemic shock. "It was in 2007, two years after Michael's diagnosis," she says. "My husband just happened to check on Michael and saw him shaking in his sleep. We couldn't understand what was going on and a quick test revealed his blood glucose was incredibly low. Michael had been doing a lot of sport beforehand and the blood glucose in his body was trying to adjust but failing. He could have died."
He was rushed to hospital where he recovered, but Evelyn was so worried by the episode that she has diligently checked on both her children every two hours throughout the night ever since. "I haven't had a full night's sleep for eight years, but I don't mind being tired if it keeps my children healthy," she says. "If either of their blood sugar is low, I'll wake them up for a fruit juice or snack. It's the only way to make sure they will be OK." Michael now has an insulin pump, which works constantly, but he also injects himself after meals, while Ksenia has to inject herself morning, night and after meals. "That's a big responsibility for these teenagers," says Evelyn.
Yet she is eager not to let diabetes interfere too much with her children's every day lives. "The kids go for sleepovers to friends' homes, have been for overnight camps and once even went for a week-long diabetes camp to the UK," she says. "I just get someone to text me their blood sugar levels during bed time. The only time I was really worried was during the diabetes special camp when I was not allowed to get in touch with them for a whole week. It's hard not to let it take over your life. There's never a moment I'm not thinking about it."
What is Type I diabetes?
Evelyn is not alone. For thousands of parents here in the UAE, Type I diabetes is a nightmare they can't wish away. It's not lifestyle-related, but has genetic triggers, although little is known about it as yet.
While the UAE has been ranked as a world number two in the incidence of Type II diabetes (the adult onset condition that is largely lifestyle-driven and is aggravated by ingestion of a high-fat diet and obesity), with more than 25 per cent of the country's population suffering from it, few people are even aware of what Type I diabetes is or how it affects the children who fall prey to it.
Dr Abdul Razzak Al Madani, director of the Emirates Diabetes Foundation (EDF), explains: "Type I diabetes is a condition where a child's immune system attacks the insulin-producing beta cells in the pancreas." Insulin is the hormone in our body that helps move the glucose contained in food we eat into our cells throughout the body. This blood glucose is converted into energy. When the body detects a high level of glucose after we have had a meal, the insulin acts like a key, opening up cells to absorb the sugar and convert it into energy. Any excess glucose is transported to the liver where it is stored as fat.
In the absence of insulin, cells are unable to use the sugar and are starved of energy, while the high sugar circulating in the blood causes dizziness, thirst, blurry vision, irritability and ultimately can push a child into a hyperglycemic coma, or even kill them if left unattended for a long time, such as overnight while they sleep.
But few experts agree on the cause of Type I diabetes. Health nutritionist, Patrick Holford, suspects several things could possibly trigger Type 1 diabetes, including an allergic reaction, food allergies, viral infections, rapid cell growth, which he claims is probably dairy-induced, and a lack of Vitamin D. Meanwhile Dr Khawla Belhoul, director of the UAE's Thalassemia Centre, mother of a Type-I-diabetic and the founder of the Sweetkidz Diabetes Support group, says: "It has a genetic origin but in many cases an environmental trigger such as a virus affects insulin production." Dr Belhoul advises, "While Type I diabetes is not preventable, it can be managed well, so it is important to educate parents to watch out for symptoms such as frequent thirst and urination and loss of weight. Its onset is very sudden and often children reach intensive care units when they become very sick. If parents act quickly they can prevent the long term psychological damage, pain and suffering of the child."
Alexander's story
Alexander Geisler's mother, Gilly, knows all about that. Her 12-year-old son was diagnosed with Type I diabetes when he was 7. "We had gone skiing to Czech Republic when Alexander developed cold and flu-like symptoms," she says. "When we came back to Dubai, we took him to the doctor. He was misdiagnosed as having a bladder infection. Then one day, all of a sudden, he was so lifeless and it looked like he had lost a lot of weight. We had to rush him to the emergency ward at a private hospital where they diagnosed him with Type I diabetes. We were devastated as no one in our family has diabetes."
Despite his condition, Alexander, who has learnt to jab himself with insulin four times a day, doesn't let it affect his every day life. He plays rugby, goes ice skating twice a week and has a scuba diving license. "If he looks after himself there is absolutely nothing that Alexander cannot do," says Gilly.
A bigger hurdle for parents is to educate school friends, teachers and nurses about their child's condition. Says Dr Belhoul: "Children with Type I diabetes often face a lot of discrimination at school for requiring needle jabs and having to eat before the pre-ordained food breaks to prevent sugar levels dropping. Teachers and school nurses need to be educated to deal with such children with more empathy, which they don't always have."
Looking ahead
A recent survey by the Landmark Group to mark its Beat Obesity campaign, revealed that more than 32 per cent of school children in the UAE are obese. These children are more prone to developing adult Type II diabetes. But, while parents can work hard at changing their children's eating habits and lifestyles to make sure they don't develop Type II, Evelyn and Gilly don't have such a luxury.
They, along with all parents of children with Type I diabetes, are working towards forming more support groups to disseminate information about this condition. "There is not so much of a stigma attached as there is very little awareness about it," says Evelyn, who has been working on sending information to her kids' school to let parents know about the condition. "I want mums whose kids have already been diagnosed with diabetes to come and join our support group.'
Gilly agrees. "A trouble shared is a trouble halved,' she says. "People have no idea what it means for a family to have a child with diabetes and what the child feels about it. It is important for us as a family to have people to talk to about this condition. I want Alexander to know that he is not the only one going through this condition."
How to cope if your child has Type I diabetes
1. You might feel angry, depressed, frustrated. Cast aside these emotions and be optimistic for your child's sake
2. Gather as much information on Type I as you can through the internet and local medical centres
3. Learn to monitor your child's blood sugar and act if it is low or high
4. Take your child to an endocrinologist, who will teach him or her how to administer insulin injections. There are different varieties of insulins - rapid action to be taken before meals and long acting especially for the night. Get the dosage set and make sure your child takes the required units
5. Get in touch with a nutritionist, who can teach your child how to count the carbohydrates units he is having. There is a direct connection between the amount of insulin units required and the amount of carbs ingested
6. Try to make sure your child has healthy, wholesome, freshly cooked meals with lot of vegetables and whole grains, which are digested slowly
7. Try to manage his or her diet so that they get to have their favourite food at least some times in a week
8. Once your child has adjusted to these routines, make sure he or she participates in all normal activities and does not feel awkward or different
9. Meet his teachers and friends and chat to them about his condition and treatments
10. Join a support group so that you do not feel alone in your ordeal and share your experiences with others
Spearheading an awareness campaign
As part of its initiative to raise awareness of and hopefully reduce the number of people suffering from diabetes across the region, Landmark Group, along with the Princess Haya Initiative for the Development of Health, Physical Education and School Sports (implemented by Dubai's Knowledge and Human Development Association) conducted workshops and health camps in schools to inform children about juvenile diabetes earlier this year.
The campaign was aimed at encouraging students to implement an active lifestyle, educating them about the dangers of juvenile diabetes, and involved a nutrition assessment, as well as diabetes tests for the children. Such safe and non-intrusive procedures included Basal Metabolic Index (BMI) testing, which was conducted by qualified physicians from Zulekha Hospital, who was the medical partner for this initiative.
This programme also saw the launch of the first ever official Dubai Schools Football League. More than 48 league teams - 32 boys teams and 16 girls teams - demonstrated their commitment to leading an active, and healthy lifestyle by taking part in this initiative.
