'Diabetes doesn't stop me from living my life'

Sometimes, life hits you a curveball when you least expect it. That's what happened to 16-year-old Kayla Jungen during a trip to Switzerland for a wedding, five years ago. While everyone else was "dancing away and enjoying themselves", the then-11-year-old was completely tired out. An uncle - who happened to be a doctor - noticed that she was drinking a lot of water and happened to perk up every time she ate sweets or some food. but only for a bit - then, she would be beat again. On a hunch, he asked Kayla's mother to take her to a doctor the next day - and his suspicions were soon proved right: Kayla had Type 1 diabetes.
A disease in which one's blood sugar levels are too high, Type 1 diabetes occurs when the body does not produce enough insulin, the hormone needed to break down sugars into glucose for energy.
The diagnosis was surprising, considering no one else in her family had it, but Kayla says she didn't think too much of it at first, because she knew a friend of her sister's who also had the condition. "I was 11, and we hadn't really learned about it at school yet, so I didn't know much. I thought it was just a matter of pricking your finger for blood once in a while."
The full impact of the situation only hit her when, while still at the hospital and wanting a bite to eat, a nurse proceeded to give her a shot of insulin instead and told her she'd have to do that anytime she wanted to eat from now on. "I was angry," Kayla recalls. "Mostly because I couldn't understand why this was happening to me. We definitely don't have a history of it in the family. So, why me?"
Grappling with the realisation that diabetes is 'for life' - the disease has no cure yet - is one of the most difficult things for patients to come to terms with. Kayla, today, has long since gotten used to her condition - and is now using her experience to create a greater awareness as a Blue Champion for Beat Diabetes, the Landmark Group's flagship CSR initiative.
The Swiss expat needs to give herself "a minimum of seven" insulin shots a day - which, she agrees, is quite a lot. "I need to do so before every single meal - even if I want to eat something as simple as grapes," she explains. But she adds that her parents have always encouraged her to take charge of managing the condition for herself. "It's made me quite responsible from a young age," she says, cheerfully. "I'm better at doing things for myself because of it."
That responsibility involves everything from ensuring she always has enough shots on hand to testing her own blood sugar levels and injecting herself with the necessary amounts of insulin. "I was quite wary of the injections in the beginning," she reveals. "I didn't have a fear of needles, but I didn't like them either. I had to learn by practising on a cushion and, at first, it really hurt because I wasn't used to it." The high school student has learnt to do the job painlessly now and says she doesn't really mind it anymore. "I still won't do it on my arm though," she laughs.
Every three months, Kayla also has to do a test to check her average blood sugar. "Ideal levels are about 5 or 6, but those are a bit difficult to maintain. I usually average about 7 or 8 on the scale, and that's not too bad. Having too many highs - like 13 and above, for example - is dangerous, because you could then stand to lose your sight, kidneys, nerves and more."
She admits she has her moments of frustration but that's mostly because she was also recently diagnosed with celiac disease - an intolerance for gluten, requiring a complete change in diet - and it's the combined inconvenience of the two conditions that tends to get to her.
With celiac disease, Kayla says learning to adopt a gluten-free diet was really difficult. "I can't have pizzas or cakes when I go to parties," she explains. "I have to pack my own gluten-free pizzas or treats." It certainly is the 'worse' of the two conditions, she rues.
By and large, however, diabetes has proved to be a condition that can be managed - and certainly not one that she allows to get in the way of her life as a teenager. "If I were to compare myself to others: I still participate in sports - everyday, in fact; I have a natural inclination towards athletics - I still eat what I want, snack when I like, go out like everyone else. No one sets me apart either, at school or anywhere else. It's only the regular need for injections that's different. But everything else in my life is just the same."
Don't think of it as a disease that's a life changer, she urges. "Don't look at it like you'll never be normal. It really doesn't change all that much in your life, if you don't allow it to." Asked how she manages to stay so upbeat, she replies, "I'm not a sad person by nature. I'm just thankful I don't have anything worse. Diabetes is still something I can control. It's not stopping me from anything I want to do right now." A big part of being able to live with diabetes is perspective, says Kayla. "Attitude is definitely everything."
DOES YOUR CHILD HAVE DIABETES?
Diabetes is a lifelong condition - but that doesn't mean it needs to get in the way of 'living'! Gilly Geisler and Evelyn Matafonov are two Dubai-based mums, who have three kids with Type 1 diabetes between them. Planning, in their books, can make a world of difference for you and your child. Consider these tips:

Sleepovers
Sleepovers can be nerve-wracking for both you, as well as the family your child is staying with. With a little extra effort, however, it is possible for your child to enjoy sleepovers with his/her friends. Here's what you can do:
. Make sure you take a sugar reading before you leave your child with the family; then, request the host to take another sugar reading before your child eats. To assuage your anxiety, you can even ask them to text you the result.
. If the readings are slightly on the higher side before bedtime (3 - 4 above the average reading) - this might actually be a good thing, as it decreases the chances of a 'low' during the night. (This is certainly not an ideal situation normally, but is acceptable once in a while.)
. Allow your child to join in with all the party guests. They can eat everything the others can - provided they do not overdo it. But then, no one should, ideally.
. And yes, they can have cake and sweets, as long as they take the right amount of insulin beforehand.

Outings
. Place all the paraphernalia your child needs on a daily basis on the kitchen table. Double-check to make sure that you have everything you need.
. Taking a cool box for insulin is a good idea. A FRIO bag is a great option, as it is specially designed to keep the insulin cool.
. A glucometer, extra strips, sweets and insulin are a must - you should have these essentials with you at all times.

Travelling Abroad
. Carry extra 'diabetes supplies' with you, as a rule, when travelling. What if you get stranded at the airport for a day or two?
. Always carry a letter from your child's doctor, explaining why you need all this equipment, why your child is wearing an insulin pump, what it does, and why you have insulin pens with you.
. Store your insulin in a cool bag, but do not ever store it in the hold. Ensure that it is carried by you or your child at all times.
. Carry needles and insulin pens, even if your child is on a pump. This is just in case the pump malfunctions, in which case, you will be stuck; it's best to be prepared. Also, make sure that you know your ratio of insulin from the pump, in case you need to inject manually.
. Ensure your child always has basic essentials in his/her bag, in case you get separated while on holiday. If you have all the equipment, you don't need to panic.
. Take enough sweets and carbohydrates for the journey, and for two days on arrival. You might arrive late and can't get to a supermarket straight away - the last thing you want is to be unprepared for a low.
. Make sure your child wears a band or something on him/her to let people know that he/she is diabetic. You will be in a foreign country, and it is important to ensure that, in case your child falls ill, people around him/her are aware of what is wrong.
karen@khaleejtimes.com