type 1 diabetes
Information and questions about Type 1 diabetes.
Of all the sports a diabetic could choose, ice skating – with its precision, edge of danger and need to be feeling 100% every time you take to the ice – isn’t the most obvious. But that didn’t stop KZN champ Rachel Lombard from competing.
Who did you skate for?
I was part of the Toti Seals Synchro Team, and we represented KwaZulu/Natal twice a year in the inter-provincial competitions, as well as the KZN championships.
How long have you been diabetic?
I was diagnosed about 10 years ago, when I was 7 years old. It was pretty traumatic, I was scared that I was dying because I was misdiagnosed – they thought it was cancer. It was a huge shock for my mom, but I just remember feeling relieved it was only diabetes and it wasn’t anything worse.
Is it difficult to compete when you have to worry about blood sugar levels on top of everything else?
I have an insulin pump, so that helps, but I still have to be very careful. I make sure my blood sugar is fine an hour or two before we’re due to go on the ice, because my pump is under my tights and my costume and it’s difficult to get to if I need to adjust my levels. I also test just before I go on the ice, because the adrenalin can do funny things to my blood sugar. And I make sure I always have fast-acting sugar on hand in case I go low.
What do you love about ice skating?
I love it mainly because it’s different, and because there’s a real community – especially with my team and the coach. I skate four times a week, so it’s also really good exercise.
What do you think the biggest challenge of living with diabetes is?
The testing – having to test all the time. And how you can never predict what your blood sugar is going to do: you’ll eat something and know how much insulin to take, and it works… And then the next time you eat exactly the same thing and take the same amount of insulin and it doesn’t work, for some reason.
What advice would you offer to diabetics who are struggling?
Get support: that’s the one thing you need, you can’t do it alone. Also be aware that parents go through the highs and lows of diabetes just as much – my mom does so much for me, I don’t know what I’d do without her.
What makes your life sweet?
Just my friends and family around me, helping me through any situation and offering support if I need it. That’s what makes my life sweet.
Get in touch with Rachel: firstname.lastname@example.org
There are no two ways about it: insulin is a miracle drug. It was discovered in 1921 and has saved millions of lives in the last 95 years. Andrea Kirk explores the topic.
“In people with Type 1 diabetes, insulin is essential for maintaining good health, and many people died from Type 1 diabetes before insulin,” says endocrinologist Dr Joel Dave. “Insulin therapy is started as soon as the diagnosis is made, and although being diagnosed with Type 1 diabetes can be a traumatic experience, with the use of insulin, you can maintain good health and achieve anything in life that those without diabetes can.”
For people with Type 2 diabetes, however, there is often a reluctance to start taking insulin. Some people manage to control their blood sugar without it, by making changes to their diet, getting more exercise and going on oral medication. But for others, insulin is a necessity.
“There’s a huge stigma about this,” says Mark Smith, who was diagnosed with Type 2 diabetes a year ago. “I feel like starting insulin would mean that I’ve failed at controlling my blood sugar with lifestyle changes.”
Diabetes educator, Jeanne Berg, sees things differently. “Diabetes is a progressive condition and insulin therapy is inevitable. Some people take longer to get to the point of starting insulin than others, but every patient with diabetes gets there eventually. There shouldn’t be any shame or sense of failure in this.”
Jeanne says that in the past, doctors would try to intimidate people with Type 2 diabetes into changing their lifestyle. “They’d say: if you don’t change your diet and get more exercise, you’ll end up blind, or have your legs amputated, and eventually you’ll die.” This blame-filled approach may be part of the reason there is still such a stigma associated with Type 2 diabetes. “People would think ‘this is all my fault, I did this to myself’, but that is not the whole truth,” says Jeanne. “Diabetes has a genetic inheritance factor to it as well.”
Doctors and diabetes educators today steer away from using scare tactics and encourage people to accept insulin as a means of coping and having a more flexible life with diabetes.
Are there any benefits to starting insulin sooner?
“In people with Type 2 diabetes, there is a theory that glucose can cause damage to the beta-cells of the pancreas, which are the cells that make insulin,” says Dr Dave. “The longer the glucose remains high, the more damage occurs. Since insulin is the best way to lower blood glucose, some suggest that insulin should be taken sooner rather than later in order to preserve beta-cell function for longer.”
The day that you are diagnosed with diabetes is a day that is hard to describe. The world stops but at the same time a neverending rollercoaster ride starts: one you never asked to get on in the first place.
I remember sitting in the doctor’s office and a funny thing happened: he said the test results came back and you’re a Type 1 diabetic. After that I was in shock. The funny thing is I knew that he was talking because his lips were moving, but honestly I have no idea what he said. It was all a blur to me. All I remember thinking is: how can this happen? I never ate much sugar and now I’m going to die. But at least I have an answer to why I’ve been feeling so sick the last few months.
After the shock set in, I remember going to the book shop to basically buy any book that had been printed that mentioned the word diabetes, and then reading them all and being more confused than ever as they all contradicted each other. After the initial diagnosis, the doctor suggested that I go and see an endocrinologist.
Well, I saw a few of them and what they were all good at was sitting me down and telling me the negative side of the disease. How you can lose your eyesight and your feet and how if you get wounds there is a good chance they won’t heal well. Then in the next breath, they explain that now you will need to go on a strict diet and inject for everything you eat ever. They seem to wonder why you look so depressed and have an attitude of, what’s the point to life any more?
At some point during the initial diagnosis, it seems we all go on a sort of autopilot. We inject when needed and ask every question we can think of, and blindly trust what our doctors say, because they’re the professionals and know what they’re talking about, right?
What we don’t realise then is that diabetes is a common condition but it’s also very individually based. What makes my levels go up can have no effect on a friend’s levels. The other thing we learn on our journey is that at some point all diabetics and carers become doctors, dietitians and endocrinologists. The only difference between us and the real doctors is that they have diplomas and we don’t, but we have the life experience and they don’t.
What I have learned the most in my love-hate relationship with diabetes is that while I hate the constant management and daily injections, being diabetic has made me a stronger person and taught me to stand up for myself. In a weird way, it has given my life a kind of warped purpose. So I guess I will always love to hate being diabetic. You know what? That’s actually okay and totally healthy.
Do you know what brittle diabetes is? We asked one of our readers, Rencia, to share her story of living with brittle diabetes with us.
I was diagnosed as a juvenile diabetic at the tender age of 5 and a half. This was in 1987, when medicine was not as advanced as it is today.
Upon diagnosis, my parents were told that I would have to take insulin twice a day for the rest of my life and refrain from eating sweets, cakes and all the good things. At that point in my life I couldn’t grasp the enormity of being diabetic. I adhered to the diets and adapted quickly to the injections and glucose testing methods. I would often hear my parents discussing how doctors had advised them that I needed to be told that due to my diabetes I would never conceive children.
The strict control became non-existent when my parents got divorced. I guess as a teenager I didn’t understand the repercussions my teenage years would have on my life.
At the age of 19, I began to notice that my vision was being halved. I went to an ophthalmologist who had me undergo all kinds of tests to determine what the problem was. I was suffering from diabetes retinopathy: when the retina detaches from the back of the eye. If not treated as soon as possible, this leads to permanent blindness. I underwent my first eye operation to reattach the retina in my right eye and had to wait four months with sight only in my left eye. During the 4 months, I lost the vision in my left eye too and for the remainder of those months I had no proper vision, just distorted images in my right eye.
After the operation to my left eye, I became critically ill with hyperglycaemia (high blood glucose levels). I was in a coma for a few days. At this point I was being treated by my current specialist. He changed my insulin and put me on four insulin injections a day, as well as four blood tests a day. I had a new lease on life it seemed and I would take hold of it with both hands. I began to keep away from all forbidden items and all seemed well.
In mid 2007, I began having frequent lows and highs. Maintaining my blood sugar levels became more and more difficult, and it was worrying as I started losing chunks of my memory when I had a hypoglycaemic episode. I saw my specialist who diagnosed my diabetes as brittle diabetes. He explained that brittle diabetes is when you have hyperglycaemia and hypoglycaemia without much warning. There is no treatment for this, except frequent blood sugar checks.
I am often ill with mostly low sugar levels, ranging from 1.6 to 2.2. I’m seldom able to determine when these episodes occur which leads me into very dangerous ground. Brittle diabetes is a sub-type of Type 1 diabetes, a term used to describe particularly hard to control Type 1 diabetes. Those people who have brittle diabetes will experience frequent, extreme swings in blood glucose levels, causing hyperglycaemia or hypoglycaemia.
At the end of 2007, I was experiencing severe tenderness in my left eye and I visited my ophthalmologist who suggested I have my left eye removed as it was shrinking and becoming noticeable that there was no vision in the eye. I had the eye removed and 6 weeks later was fitted with a prosthetic eye.
Against all odds, I conceived my first child in 2010. It was a petrifying experience for me because I was so afraid of something going wrong. On the 4th of October 2010, I gave birth via C-section to my son Tyler. It was a very trying time keeping my levels down. I have successfully had two children – my second pregnancy was easier, though I was hospitalized three times in my first trimester. Once that was over, I maintained constant contact with my specialist and tried my utmost to keep my levels between 4 and 8mmol/l, so that I didn’t have to deal with the effects of my brittle diabetes.
Living with Type 1 diabetes is not as easy as most people thank. It’s a constant challenge and mine is slightly more difficult. However, I do try to rise to each of the challenges to the best of my ability. It’s my great desire to one day receive sponsorship in order to obtain a DAD (diabetic alert dog) – a dog trained to pick up if your blood sugar is high or low by the scent your body omits. Having one of these dogs as a brittle diabetic would be such a great help. It could be a lifesaver.
I urge parents, teenagers and even older individuals to take extra care of their diabetes from day one of diagnosis in order to prevent the challenges I face daily. See your doctors regularly and you could lead a fairly normal life. Diabetes is a life-altering illness, but with the correct care from day one you can lead a fairly normal life.
– Rencia Gabriel-Phillip
Would you like to share your story of living with diabetes with the Sweet Life community? Email us – we’d love to hear from you.
It might seem as though being a restaurant chef would be too tempting a job for a Type 1 diabetic, but 30-year-old Vanessa Marx has made an art out of making healthy food delicious – and accessible.
When did you find out you were diabetic?
I was about sixteen and in high school – seriously bad timing! I had all the usual symptoms. I was drinking about four litres of water a day and falling asleep during class because I was so exhausted. My mom eventually suspected diabetes and I had to be hospitalised. It was a traumatic experience. I’ve always loved food, and I remember lying in my hospital bed naming all the foods I could never eat again… It was a long list!
How has diabetes changed your daily life?
That’s a hard question, because it’s so much a part of my daily life. It can be difficult, sometimes, explaining to people who don’t have diabetes how you’re feeling. If I wake up with low blood sugar, for example, I’m exhausted before the day begins. People understand a throat infection, but they often don’t understand what waking up low feels like. As a head chef, I need to be alert every day, taking charge of the kitchen. There’s no room in a busy kitchen for feeling tired or unwell because of high blood sugar or needing time out to have something sweet because of low blood sugar.
Isn’t it difficult to be around food all day? How do you resist sweet treats?
It is quite tricky! Often just the act of making sweet treats for someone else satisfies the urge for me but other times I’m pretty tempted: what puts me off is that I know how I’ll feel later. I do believe in “everything in moderation”, so I allow myself a treat now and then. As long as it’s a once-off, and I’m not doing it every five minutes!
What advice would you offer to other diabetics?
Be disciplined! Pay attention to your diet: what you eat plays a huge role in how you feel. Also don’t feel like you’re on your own, don’t be afraid to ask for help – talk about your diabetes, and explain to those around you what it feels like. There’s still a stigma around diabetes, that it’s only people with weight problems who are diabetic. But the only way we’re going to change that is by talking about it.
What makes your life sweet?
My family and friends, and my work.
Get in touch with Vanessa: @vanessajaynem on Twitter and Instagram
Every two years, the International Diabetes Federation (IDF) publishes a Diabetes Atlas, with estimates of diabetes facts and figures from around the world. The 8th Diabetes Atlas is now live – take a look! Here’s more information about it.
To mark World Diabetes Day, the International Diabetes Federation (IDF) released new estimates on the prevalence of diabetes around the world, indicating that 1 in 11 adults are currently living with diabetes, 10 million more than in 2015.
Data published in the 8th edition of the IDF Diabetes Atlas confirms that diabetes is one of the largest global health emergencies. More action is required at the national level to reduce the economic and social burden that it causes.
Type 2 diabetes
Diabetes, which is associated with a number of debilitating complications affecting the eyes, heart, kidneys, nerves and feet, is set to affect almost 700 million people by 2045. Over 350 million adults are currently at high risk of developing type 2 diabetes, the most prevalent form of the disease. One in two adults with diabetes remain undiagnosed, emphasizing the importance of screening and early diagnosis. Two-thirds of adults with diabetes are of working age and 8 million more adults living with diabetes are over 65 years old.
“Diabetes causes devastating personal suffering and drives families into poverty,” said Dr. Nam Cho, IDF President-Elect and Chair of the IDF Diabetes Atlas committee. “There is urgency for more collective, multi-sectoral action to improve diabetes outcomes and reduce the global burden of diabetes. If we do not act in time to prevent type 2 diabetes and improve management of all types of diabetes, we place the livelihood of future generations at risk.”
Diabetes and women
Diabetes has a disproportionate impact on women, the focus of IDF and its affiliated members in over 160 countries this World Diabetes Day. Over 200 million women are currently living with diabetes and many face multiple barriers in accessing cost-effective diabetes prevention, early detection, diagnosis, treatment and care, particularly in developing countries. Women with diabetes are more likely to be poor and have less resources, face discrimination and have to survive in hostile social environments. Diabetes is also a serious and neglected threat to the health of mother and child, affecting one in six births and linked to complications during and after delivery.
“Women and girls are key agents in the adoption of healthy lifestyles to prevent the further rise of diabetes and so it is important that they are given affordable and equitable access to the medicines, technologies, education and information they require to achieve optimal diabetes outcomes and strengthen their capacity to promote healthy behaviours,” said Dr. Shaukat Sadikot, IDF President.
Urgent action needed
IDF welcomes all the international commitments on diabetes that have been made over the last few years and acknowledges that some advances have taken place. However, it is clear that urgent action is still required to achieve the targets agreed by UN member states in 2013 and 2015. These include a 0% increase in diabetes and obesity prevalence; 80% access to essential medicines and devices by 2025; and a 30% reduction in premature mortality from NCDs by 2030. To this end, IDF has launched a call to action for the 2018 High Level Meeting on NCDs, calling on governments to renew their commitments and increase their efforts towards achieving the agreed targets.
“IDF is calling for all nations affected by the diabetes pandemic to work towards the full implementation of the commitments that have been made. We have both the knowledge and the expertise to create a brighter future for generations to come,” said Dr Sadikot.
If you met Shiara Pillay, a happy, healthy and confident 21-year-old who loves Art and is studying International Relations and Diplomacy, you wouldn’t guess that she had a chronic condition. But Shiara is a Type 1 diabetic. She just doesn’t let it get her down.
When did you find out you were diabetic?
When I was in Grade 4 and just about to turn 10. It wasn’t too horrible a diagnosis in comparison to some – my parents noticed that I was losing an extreme amount of weight, I was very dehydrated and waking up in the night to pee – all the classic symptoms.
Then one morning I threw up and they took me to the doctor. I was in hospital for a week and since then I’ve figured out how to live as normal a life as possible with diabetes. The hardest thing to get used to was not being able to eat sweets!
How has diabetes changed your daily life?
I think I’m obviously way more healthy than I would have been because I have to watch what I eat. I have a great diabetes team, and they’ve helped me to adjust my medication and my meals whenever I need to. I like the idea of being able to eat everything in moderation.
How does it help to have a community of fellow diabetics?
It helps to know that there are others in the same situation, it reminds you that you’re not alone. Youth With Diabetes really helped me to meet other people who have to think about the same things every day. I also think diabetes education is so important – new diabetics especially need to know what helps and what doesn’t, what you can eat, how you should exercise, how you feel when you’re low or high. It’s nice for me to share my experiences too. I do have bad days, it’s annoying to have to inject every day, but it’s just something you have to make the best of.
What advice would you offer to other diabetics?
Just do it – you can’t get out of it. If you look after yourself, it’ll be better for you in the long run, it’s for your benefit. And it makes you healthier too!
What makes your life sweet?
Just being happy – when things are going well and the sun is shining!
All you need to know about your medication – and how to store it.
- Insulin is a hormone that controls the amount of glucose in the blood. It acts as the “key” that lets glucose (from food) leave the blood and enter the cells of the body.
- People with diabetes either do not make enough of their own insulin (Type 1 diabetes), or the insulin their body makes is not as effective as it should be (Type 2 diabetes). As a result, most people with diabetes need to take medication, in tablet form or insulin injections.
- While it is often possible to control Type 2 diabetes with diet and exercise at first, eventually insulin will be necessary for most people with Type 2, as diabetes is a progressive condition.
- There are three different kinds of insulin: short-acting, long-acting and combination.
- Short-acting insulin is taken at mealtimes to cover the glucose released from the food that is being eaten.
- Long-acting insulin has a slow release and works as a basal (background) insulin for a number of hours – it is usually taken once or twice a day in addition to short-acting insulin.
- Combination insulin is a mixture of long-acting and short-acting insulin, often prescribed to Type 2 diabetics.
- Insulin must only be taken on prescription from a doctor, as it is essential to take the right dose (prescribed for you) at the right time.
- Storing insulin correctly is important: it should not get too hot (over 30°C) or freeze. Spare insulin should be kept in the fridge, and the pen you are using can be kept at room temperature for 1 month. Always keep insulin out of direct sunlight.
- Learning how to inject properly will make the injections as pain-free as possible.
Have you heard about LifeinaBox?
I’ve been hearing a lot about it lately – it’s a “device that will revolutionize the transport of medication worldwide.”
Here’s what they say about it…
LifeinaBox is the world’s smallest fridge, and the culmination of many years of research to produce a universal solution that will allow users to travel any place, any time, knowing that their medication is kept at exactly the right temperature. Suitable for any heat-sensitive medication such as insulin, growth hormones, arthritis or multiple sclerosis medications, it allows users the freedom to travel anywhere, anytime, knowing that their medication is kept at exactly the right temperature.
This state-of-the-art device uses a combination of thermoelectric energy and batteries that will allow the user to be mobile with his medications under any conditions for up to 24 hours without the need to recharge his device. Operating on 110V or 220V or with a car cigarette lighter, LifeinaBox is totally environmentally friendly and contains no hazardous gases, tubes, coils or compressors.
The greatest inventions are often born out of simple necessity. Who would have an idea as absurd as making a fridge just to carry medication? We asked Uwe Diegel, co-founder of LifeinaBox, to tell us a little more about his idea…
My brother, Dr Olaf Diegel, visited me in France in the infamous heatwave of summer 2003. Olaf is a well-versed traveler and is used to travelling with his insulin and keeping it cool using iceboxes and cooler bags (insulin, like many other medications, is sensitive to heat and should be stored at a temperature between 2 and 8°C).
Olaf booked himself into a small hotel near Auxerres in France. When he arrived at the hotel, he noticed that there was no fridge in his hotel room (even though he had particularly insisted on this when making his booking). He needed a fridge to store his insulin. So he arranged with the clerk at the entrance desk to keep his insulin in the fridge in the kitchen.
Olaf does not speak French, coming from New Zealand. A few hours later, Olaf needed his insulin and went down to reception to ask for it, only to discover that it was placed in the freezer by accident by someone in the kitchen. He is thus obliged to have the night pharmacy opened just to get some fresh insulin.
We decided to design the idea of a portable fridge and our prototype actually worked quite well, so we sent it to an industrial design contest run by NASA in the USA. The product became a winner at the contest, received unexpected publicity and became the subject of an international story on the CNBC TV network.
When and where will Lifeinabox be available to South Africans?
We just launched LifeinaBox on the 12th of September on the Indiegogo crowdfunding platform. Crowdfunding platforms are places where people can pay for a product in advance at a preferential rate, paying in advance, so that their money can be used to accelerate production. We are already on our 9th generation of working samples and are nearly ready to go into mass production at the beginning of 2018. So the physical delivery of LifeinaBox should be by the April/May 2018. LifeinaBox is by definition a product that is born global and that will be launched in all countries at the same time. But the quickest way for people to get their hands on a LifeinaBox is to order on the crowdfunding campaign, as the first waves of production will be dedicated to people who have already placed an order.
How much will it cost?
LifeinaBox is quite an expensive device to produce, because we need it to basically last forever. The expected price in South Africa would be somewhere between R2800 and R3000. Next year we will launch LifeinaTube, which is a much cheaper device because it will only hold a single insulin pen.
Where can it be used – must it be plugged in? Can it be taken on planes?
It can be plugged in just about anywhere, from 110 to 240V, in a car’s cigarette lighter, or with a battery pack. We are still developing the battery packs and will be able to have 3, 6, 12 or maybe even 24 hours of battery life. We are really working quite hard on the batteries to give it more mobility. Right now I am already at 12 hours, but I am sure that by launch time I will already have a 24 hour battery. It is for people to take to work (so they don’t need to put their medication in the work fridge), in the car for long car trips, at home (so that the children don’t have access to medication in the kitchen fridge) and it can also be used on a plane.
What’s your LifeinaBox elevator pitch?
Nearly 4% of the worldwide population is prisoners of its medication that has to stay in the fridge at all times. LifeinaBox is the world’s smallest fridge for the safe transport and storage of fragile medication. LifeinaBox gives millions of people worldwide the freedom to travel anywhere, any time, knowing that their medication is at exactly the right temperature.
What makes your life sweet?
I still, 30 years later, wake up in the morning and can’t wait to get to work. My work is wonderful, because I always strive for perfection. I never think of my products as medical devices, but more as tools for the heart. And if you can touch the hearts of people the possibilities are infinite.
My first career was as a concert pianist, so I still spend a lot of time behind the piano, especially with my children who are also musicians and artists.
Richard English has Type 1 diabetes – but that hasn’t stopped him from embarking on all kinds of adventures, including a seven day, 1000km cycle across England and Scotland. We ask him for his secrets to a healthy life with diabetes.
When did you find out you were diabetic?
Eight years ago, when I was 25. I had been feeling incredibly under the weather and stressed, but I blamed work and too much partying – I just thought I was run down. Then I started getting all the symptoms: extreme thirst, dramatic weight loss, drinking 2 litres of water a night and needing to pee every hour.
How has diabetes changed your daily life?
Obviously I have to inject insulin before I eat anything, and I test my blood sugar more or less before every meal. Exercise is also more of a need than a want – I always used to exercise, but now I can see the effect on my blood sugar results, immediately. That’s very motivating.
I went cold turkey on a lot of things when I was diagnosed, and I haven’t kept any bad habits. I’m 20kg lighter than I used to be, and I don’t over-indulge any more. I suppose, in my case, diabetes could be seen as a positive thing. I wasn’t living a healthy life before I was diagnosed, and I have a better quality of life now.
I don’t think I could have adapted so well to life with diabetes if it weren’t for my wife, Casey. She never left my side, and all the dietary changes I adopted she did too. She also helped a lot in the early stages, when there was just too much information for me to absorb. She got behind the science of it and now knows more about low GI and its effect on blood sugar than I do!
Have you always been a cyclist?
I got my first bike when I was 5 years old, and I’ve almost always had a bike. Cycling is a big part of my life, and I really love it. I stopped exercising for about 6 months after my diagnosis, because I was uncertain about what it would do to my blood sugar, and every so often I have to cut a ride short because I’m going low. But most of the time diabetes doesn’t get in the way of my cycling at all.
Can you tell us about the Ubunye Challenge?
The Ubunye Challenge is a triathlon event organised by an old Rhodes friend of mine, Cameron Bellamy in 2012. He decided to raise funds for the Angus Gillis Foundation by doing an extreme cycle, swim and rowing challenge. I joined him for the cycle – I rode for seven consecutive days and covered 1000km through howling gales, rain, sleet and snow. It was in April, which was supposed to be spring, but it was shockingly cold. By the third day, we outran the weather and I saw my shadow for the first time. That was a good moment! 1000km seems like an unbelievable distance, but if you do it in 120km chunks it’s not that bad.
What advice would you offer to other diabetics?
To me, the most important thing is that you have to stay positive and optimistic, because diabetes is not going to go away. As soon as you can smile at it and look it in the eye, you’re on your way to living a happy life with diabetes. The sooner you can get positive about it, the better.
What makes your life sweet?
My wife Casey, my wonderful son Robbie, weekends with friends, good food, my bike, and exploring my new home city of London.
Get in touch with Richard: email@example.com
We were just sent this advice about raising children with diabetes… It takes a family to raise a diabetic child, as we all know! Do you have anything to add?
Hearing the diagnosis for the first time can be overwhelming and will leave any parent and child with mixed emotions – it’s unfair, it’s exhausting, it’s stressful, it’s scary and it’s tough to manage. Yet there is nothing on earth that any parent could have done better to prevent their child from living with Type 1 diabetes. It is estimated that there are now more than half a million children aged 14 and younger living with Type 1 diabetes according to the 7th IDF Diabetes Atlas.
According to Dr Ntsiki Molefe-Osman, Diabetes Medical Advisor at Lilly South Africa, Type 1 diabetes is a disorder of metabolism caused by the body’s immune system which attacks the cells in the pancreas that produce insulin. “Children are not born with it, rather it develops over time and there is usually a genetic predisposition. In children, Type 1 diabetes presents commonly at around 14 years of age and younger. This means that Type 1 diabetes is a lifelong condition, it is serious, and managing it needs to be done diligently as poor control of the condition today will have lifelong repercussions. When a child is diagnosed with Type 1 diabetes, so is the entire family who all need to adapt to a new lifestyle.”
“The importance of good glycaemic control can’t be emphasized enough,” says Dr Ntsiki Molefe-Osman. The basic 101 of managing and preventing the complications of Type 1 diabetes is careful daily management of blood glucose and sustaining tight glucose control as close to normal levels as possible.”
“Diabetes is a progressive disease, which left unchecked will cause organ damage. This has significant health repercussions for later on in life – from kidney failure, heart failure, blindness, nerve damage (diabetic neuropathy) and as a result loss of limbs. What you do for your diabetic child today and the responsibilities you teach your teen in managing Type 1 diabetes, will influence the quality of life they can expect to live later in life,” explains Dr Molefe-Osman.
Why do Type 1 diabetics need insulin?
People living with Type 1 diabetes do not produce any insulin at all, so it needs to be replaced with insulin injections. Insulin moves blood sugar into body tissues where it is used for energy. When there is no insulin, sugar builds up in the bloodstream. This is commonly referred to as high blood sugar, or hyperglycaemia – it is dangerous and has many side effects. Fortunately when the blood sugar is stabilised with insulin treatment, these symptoms go away.
It can be managed
While a diabetes diagnosis for your child may come as a shock and will mean that lifestyle adjustments will have to be made, it is important to remember that with consistent control and the support of a healthcare provider, people living with Type 1 diabetes can live full, active lives.
Family support is vital
Managing Type 1 diabetes in your child takes a lot of courage and determination. Imagine the mountain that a child faces knowing that injections will be part of their daily routine. They may also worry that their condition will preclude them from enjoying all the things that other children get to experience, or lead to them being treated as ‘different’ in their school and peer environment.
It all comes down to how you work together as family to support and guide your child in helping them see their daily treatment regime as a positive step towards a healthy and normal life, rather than as a punishment or burden. It is important to help your child believe wholeheartedly that with the right control and responsible approach, they can do whatever they want to do.
Managing chronic illness
“Coping with and learning to manage a chronic illness like diabetes is a big job for a child or teen. It may also cause emotional and behavioral challenges and talking to a diabetes educator or psychologist can help immensely. It’s also important that family, friends, teachers and other people in your child’s network know of and understand the condition so they are alert to any symptoms or signs that their blood sugar is out of control and what to do to help them in an emergency situation,” adds Dr. Molefe-Osman.
It takes a huge amount of discipline on the part of the parent and child in managing the demanding diet, lifestyle and treatment regimen, so it’s essential to establish a routine that works for everyone concerned. Establishing good habits early, providing a support structure and ensuring that your child understands why good control is important are vital. It’s the difference between your child managing their diabetes, or diabetes managing them,” she concludes.
- The 7th Edition of the International Diabetes Federation Atlas, World Health Organisation (WHO)
- http://www.who.int/mediacentre/factsheets/fs310/en/), Statistics SA
“My son was just diagnosed with Type 1 diabetes and I want to know what to do about children’s parties and play dates? I don’t want him to feel ‘different’ but I also want to make sure his blood sugar won’t get out of control.” Linda van der Merwe.
I’m not sure how old your son is, but diabetes at any age can be difficult. Rest assured, what seems overwhelming now will eventually become routine.
Diabetes affects a child’s emotions, and badly controlled blood sugar can make diabetics feel irritable. If your son forgets to take insulin for a piece of cake at a birthday party, for example, he could end up fighting with his friends. Talk to him about the kind of food that will be at the party and help him to make decisions about which foods to choose, and which to avoid. Make sure he has something sweet on him in case he goes low, and chat with him about what to do if he feels funny. Most importantly, let him know that you are only a phone call away.
Yes! The thought of your child going off to a party at someone else’s home may make you scared. Away from your control, over-excited by all the fun and surrounded by delicious high sugar and high carb treats. A parent’s worst diabetic nightmare. But just remember: a child with diabetes is still a child. And children LOVE birthday parties!
It’s a good idea to call the host parent and find out what sort of food and drinks are planned for the party. You can even offer to provide a platter of your child’s favourite (diabetic-friendly) snacks, so that he can share them with his friends. Let the host know that you will have your phone on you the whole time.
Lastly, try to relax. With careful planning, your son can safely enjoy birthday parties as part of his childhood.
– Jeannie Berg, Diabetes Educator
Stages of Diabetic Grief:
Dealing with life can be tough enough for emotionally strong people, but being diagnosed with diabetes changes the ball game completely, and sends you on a never-ending emotional rollercoaster ride.
Most people think that grief only applies to losing a person. But when you are diagnosed with diabetes, your world stops and the person you were before ‘dies’. The same stages of grief that apply to losing a person, mainly anger; denial; bargaining; depression and acceptance, apply to diabetic grief, but we have a few extra for good measure. The stages begin at the moment of diagnosis and never quite end, thus the diabetes loop begins and we continue to cycle through the stages on our new journey.
The first stage: Shock
First, there is denial and shock. You hear the doctor say that you have diabetes, and your mind stops.
‘It’s not possible. I don’t even eat that much sugar.’
That’s the shock part.
The second stage: Denial
Then you think, ‘Well, I will just inject for a bit till I feel better and it will be okay.’
This is denial. But unfortunately diabetes and the need for good control leave little room for denial to live.
The third stage: Anger
Anger quickly follows the denial, but this stage is hard to overcome, and you never fully let go of the anger. You get angry at yourself for not going to the doctor sooner and getting checked. You get angry when your blood sugar levels are high or low, and this leads to stress which will increase your levels. Of course in the anger phase, we all ask ‘why me?’ and ‘what did I do to deserve this?’ So we open the door to the bargaining and depression stages.
The fourth stage: Bargaining
As diabetics, we become expert bargainers, even though all our bargains are one sided. We bargain with our medical team that if we do things a little differently, our results will change, but mostly we bargain with ourselves. This is dangerous. We bargain that since our levels are good, we will eat now and skip a dose, and it will be fine. But each bargain we make can lead us closer to the depression stage. When our bargains fail, and they do, we get depressed and loop back to anger.
The fifth stage: Depression
Depression is something that most diabetics battle with. We get depressed when our blood sugar levels are bad, and we have not done anything wrong. Mostly, we get depressed when our routine and bargains fail us. For example, when we think we have everything under control and our levels are good, that bad day hits and we have to start all over again.
The sixth stage: Anxiety and fear
With the normal stages of grief, the next one would be acceptance. With diabetes, however, there are two extra stages. After depression come anxiety and fear. As diabetics, we tend to become very anxious and fearful people. Since diabetes is an unrelenting disease with constant management and a constant cycle of injecting, carb counting and weighing of food and reading of labels, it does not allow for any days off. It’s no wonder we have anxiety and fear! We never know what will happen from one day to the next, therefore it also makes it harder to move to the acceptance stage.
The seventh stage: Acceptance
Acceptance is something that even the most veteran diabetic struggles with. It’s the one thing we all want, and yet we rarely achieve. We all live in hope of a cure that will end our rollercoaster ride, and stop our management routine. There is a difference between acceptance and compliance. What can look like acceptance is in fact compliance. We need to acknowledge that compliance is good and normal, but we also need to acknowledge the fact that we will possibly never gain full acceptance of our condition. That is why we always live with a bit of hope.
The daily rollercoaster
Grief is something very common in everyday life, but in the diabetic life, it’s harder to overcome. We are on a constant rollercoaster ride that we have no control over, and never asked to get on. We are always wishing for a cure.
Even nine years after my diagnosis, I still find myself replaying these steps in no certain order. Unfortunately, there is no diabetic nirvana. It is a daily rollercoaster ride of emotions. The trick is to try not to get stuck in a specific stage, and realise that with diabetes, it is an ever-evolving process through the stages of grief.
We need to be ready for whatever comes our way. We need to keep in mind that the body reacts to emotional trauma and excitement by triggering a chemical reaction that will make the blood sugar rise, and also remember that with grief and life, it is normal to have bad days and we must try and enjoy the good days and not linger on the bad days.
Musician, actor and Type 1 diabetic – we find out how Howza fits it all in.
How long have you been diabetic?
Since 2003: I was 21 at the time. I was actually introduced to diabetes from a very young age because my father had Type 2 diabetes, but I was very ignorant – I didn’t know what it was until I got it. But I think the younger you are, the easier it is to adapt your life.
What was your diagnosis like?
You know, all the symptoms kicked in – loss of weight in a very short space of time, dehydration, constantly going to the toilet. I didn’t understand what was going on. When you lose weight like that you instantly associate it with HIV/AIDS, because there’s so much awareness of that. So obviously I panicked… But I did the responsible thing and went to the doctor – that’s when I found out I was diabetic. I wasn’t exactly relieved, the doctors put the fear of God in me by telling me all the things that could happen to me. It was hard to come to terms with…. But I was scared, and I was willing to turn my life around for the sake of living longer.
What’s the biggest challenge of living with diabetes?
Obviously diet and exercising. I was saying to my wife the other day, as much as I enjoy going to gym, it’s never easy. You need to find a way to motivate yourself to go to gym 3 or 4 times a week – self-motivation is important to live a healthy life. Nobody likes gym, in all honesty! But at the end of the day, when you put your mind to it, you’ll end up enjoying it.
I used to live a very unhealthy lifestyle – eating fast food and drinking every day. That had to change. I’m not saying be a health nut, but you need to find a way to do things moderately. If you’re going to drink, you need to drink responsibly and be aware of your sugar levels. I decided, instead, to stop drinking. But it was difficult for my friends to understand – you’re not drinking, so all of a sudden you’ve become a priest! It wasn’t easy, trust me, that was the most difficult part, especially as a youth. But at the end of the day I became selfish and told myself, “It’s not about them, it’s about me.” If I don’t take care of myself, they’ll still be cool – I won’t.
What advice would you offer to other diabetics?
I always say to people – look, I’m living with it, it’s not the end of the world. As cliché as that might sound, that’s the actual truth. I’m living a healthy, normal life with diabetes. Like I said, I don’t want to put myself on a pedestal and act like I’m perfect. I have my challenges. So when I speak to the youth I try to be as open and truthful as I can, so that they can relate. At the end of the day, the bottom line is that you have to be responsible for your own life.
What makes your life sweet?
My daughter, Tumelo.
Get in touch with Howza: @Howza_SA on Twitter
We just got an email from Derick Truter, who is a Type 1 diabetic and also a Mr South Africa contestant. Here’s his story – let’s all support him on his Mr SA journey!
Let me quickly introduce myself.
My name is Derick W Truter (Age: 21), and I am one of the Top 50 Finalist for the Mr South Africa Competition of 2017.
As challenge one of four (1/4), we had to raise a minimum amount of R10,000.00 for CANSA. We are being judged on our creativity and hard work during the contest. I held a “Potjie” Contest and family day to raise funds for this good cause; we have raised R13,000.00.
I was born in Carletonville, Gauteng (06/06/1996), and grew up living in Gauteng. I was diagnosed with Type 1 diabetes on 14/10/2010 in the Potchefstroom Medic Clinic hospital, after I was rushed to the medical department after my local doctor tested my sugar and found the meter saying “HI”. This was after my grandma noticed diabetic symptoms. At the time of hospitalisation, my blood reading showed 34.4mmol.
In 2011, I was also diagnosed with Pancreatitis (Inflammation of the Pancreas, causing abdominal pain). I went for several medical procedures, including CAT Scans and Endoscopy. With the time passing, I have already begun to experience diabetic complications, as my eyesight is getting poor, and I still experience occasional abdominal pain caused by the inflamed pancreas.
But today I am standing strong as one of the MR SA contestants.
As a diabetic, I fully understand the emotions we have to deal with daily: this is not an easy condition to live with, because it takes time to manage and a lot of patience…
Sometimes I also experience ups and downs and days I am not feeling well, and I know how hard it is to educate other people, who think diabetes is caused by eating too much sugar.
Insulin is not a cure: it is life support.
I want us to find a cure.
I will stand strong, and fight this condition every day.
I want to be a voice for every other diabetic!
Of course, Sweet Life has always shared recipes for treats as well as ordinary food, because we believe that you can’t be on a diet your whole life, and diabetes is definitely sticking around for your whole life… But still, it made me feel guilty to use sugar in recipes when I know what sugar does to my blood sugar (bad, spiky things!)
That’s why I was so delighted to be given Natreen artificial sweetener to test out. I’ve always been a bit scared of artificial sweeteners because of aspartame, which has been linked to cancer, but Natreen doesn’t have any aspartame which makes me very happy! (Apparently the claims of aspartame being linked to cancer haven’t been proven, so it’s not something that they can shout about any more).
My next concern, though, was what replacing normal sugar with a sugar substitute would do – particularly while baking. I’m very happy to report that the result was exactly the same, and my non-diabetic friends didn’t even notice the difference! I made our special occasion Flourless Chocolate Tart and it was simply fabulous. Best of all, my blood sugar readings were heaps better than if there had been sugar in the cake. That’s because the sweeteners in Natreen (cyclamate and saccharin) don’t have any carbohydrate – as opposed to sugar, which is 100% carbohydrate. I actually asked for a breakdown so that you could see exactly what I was talking about – take a look below:
- 8 drops Natreen Liquid = 1 tsp sugar (4.2g)
- 100ml Natreen Liquid = 0.96 calories
- 1 tsp sugar (4.2g) = 16 calories
- 100g sugar = 387 calories
- 6.67ml Natreen Liquid = 100g sugar
- 100ml Natreen Liquid = 0g carbohydrates
- 100g sugar = 100g carbohydrates
So for those special occasions when you really want something delicious and sweet, I would highly recommend using Natreen instead of sugar… Your blood sugar will thank you!
We relocated a year ago from the good old Gauteng to Nottingham Road in the Midlands. I have Diabetes 1 and am looking for specialist physician, I have tried two one in Hilton and one in Pietermaritzburg. The one in Hilton sent me to be scanned for kidney failure, the radiologist found nothing and could not understand why I was sent there.
The second one in private hospital Pietermaritzburg, saw me the first time where I presented him with a letter of introduction from my previous specialist as well as a copy script of all my medication agreed to by the doctor and my medical aid. He then said on my next visit he want a complete set of blood test done so he can build up his own file on me. This was done and dusted and sent to him a week before my scheduled appointment, the day before my appointment they cancelled the appointment, when I asked why I was told he is an I house doctor with the hospital.
When I explained that I urgently needed a script because my repeats were finished I got nothing but attitude from this practice, even after explaining to them that I can’t stop my medication to suit them, after a few days of verbal battle I was given a new script with 6 repeats to date I am still waiting for a new appointment date, I won’t be going back there. And then the cherry on the cake the medical aid rejected all the blood test bar those that conforms to my treatment plan, which meant I had to pay a whopping R 1600.00 out of my pocket (I’m a pensioner so this type of spend really puts a strain on my finances). The medical aid insisted that these tests where not necessary.
I can’t believe the unprofessional attitude here in KZN, I only have two repeats left and am desperately trying to find a specialist physician, can you help me please.
It’s so heartening to read all of the posts on your website and learn from all of your experiences! It has inspired me to share my story on your website.
I am a 40 year old Indian male. Two years ago (18 December 2013) to be exact, I had admitted my self to the Umhlanga Netcare hospital. I was just too tired, too run down and did not know what was going on with my body. I had started feeling tired, restless, sleep deprived a few days before. I was also very stressed out and emotionally down due to a lengthy divorce battle and being separated from my children. The doctor attending to me admitted me to ICU. I was undergoing a Type 1 Diabetic Keto Acedosis attack. I lay in hospital for a week. When I was finally discharged, my weight had dropped from around 85 kg to 68kg! I was totally insulin dependent, and was diagnosed as a Type 1 Diabetic at the age of 38.
My world seemed to be collapsing around me. First, the divorce/separation from my wife and kids (who mean the world to me), and now finally my health just failing me completely. I just could not cope with anything at that point in time.
Eventually I pulled myself together. I started off my new life by following my Insulin dosage instructions carefully, and by doing relentless research on Diabetes Type 1 and read up on everyting about Diabetes and related topics/posts/blogs etc. I learnt about a balanced Diabetes nutrition and and how to shop, prepare and eat food Diabetes Smart. I eat a low fat, controlled Low GI Carb Diet, with no refined/processed foods. I have developed an exercise routine that I follow religiously. My eating pattern, portion controls and diet have become a daily way of life now. Its embedded in my lifestyle.
When I was going through the Type 1 DKA attack, my blood Glucose was 27 mmol/l, my HbA1C at that time was 18.5 percent and Cholesterol 4.67 mmol/l. Since Dec 2013, I do HbA1c’s every 6 months, together with Cholesterol checks etc. My last two HbA1C’s were 4.90 and 5.10 mmol/l, and Cholesterol 3.67 mmol/l.
I believe that I have my condition under control, and firmly believe that I can still have a meaningful, productive life of good quality, if I maintain my Diabetes Care Routine.
Type 1 Diabetes does not have to be a death sentence, you can turn it in your favour by living and eating healthily and staying positive about your life.
Cheers for now everyone and happy, healthy living!