http://www.borntorun.com.au/donate
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http://bigredrun.everydayhero.com/
Steve Donovan, from the Northern Beaches in Sydney, is a little overwhelmed by the lengths his father, Greg, will go to, to help find a cure for him and all type 1 diabetes sufferers. The twenty-year-old describes the lead up to the Big Red Run, from diagnosis to preparing to run alongside his dad, brother Matt and the rest of the Born to Run team. Embarking on the road trip to Birdsville in a 4WD convoy of family, organisers, and girlfriend Ashley, he tells of his determination to reach his simple goal: to finish the Big Red Run, whatever it takes.
What led to your type 1 diabetes diagnosis as a teenager?
I was diagnosed a couple of weeks before my fifteenth birthday. What ultimately led to my diagnosis was a tooth infection, which brought on the diabetes. Any autoimmune disease can be triggered by an infection. Leading up to diagnosis I lost a lot of weight, was going through fluid a lot, urinating a lot. I was also constantly tired, lethargic. I remember I was falling asleep every day on the bus to and from school and at the bus stop.
I knew there was something wrong but being a typical male I didn’t do anything about it until one day my Mum and Dad said that I looked awfully skinny. I took off my shirt, looked in the mirror and thought, “holy crap, I actually am!” I truly looked anorexic. My parents looked up the symptoms, which indicated diabetes. We booked in the next day for a doctor’s appointment, did the blood sugar levels on the spot and they pretty much diagnosed me then and there. I think my blood sugar level was 16mmol at that time after fasting overnight. The normal range is 4-8mmol.
Mum’s been a nurse most of her life, firstly in hospitals and then in aged care so she obviously knew quite a bit about diabetes. Dad knew a few bits and pieces but no one knew what it was like living with someone with diabetes. At fourteen, I had no idea at all what it was. I’d heard people needed sugar for it and that’s really all I knew about it.
It was like diving into the unknown. It was a bit scary. The first year was about getting used to it and I felt like I was in control of it. That’s because I paid a lot of attention to it. Being new to the world of diabetes, I wanted to get it right but there was a lot of struggle I guess in the first year. After that it kind of comes more naturally, just becomes part of everyday life.
Being young teenagers, they were not very educated about what diabetes was. Some had relatives who had type 1 diabetes and knew about it but most of my close friends I had to teach over and over again. They always asked the same questions (laughing), “What is it? What do you have to do? What happens if this happens?” so it felt like I was repeating myself a lot. But I needed to teach them all about hypos and awareness and what they needed to do in that situation. Or if they found me acting a bit strange! But I felt a lot of love at that time. I got a lot of support from my friends and family.
Probably, “don’t stress about it too much”. The first year or so is tough but it all comes eventually, pretty naturally. It just becomes part of your life. And you can always hope for a cure. They say a cure is not too far off now, so you’ve got hope. Just don’t stress about it too much.
I played a lot of sport; rugby, soccer, tennis, all sorts of sports, and at diagnosis I continued to play rugby until it just got too hard. I couldn’t do it anymore. I felt that diabetes took over and I just couldn’t play rugby because it was too much effort. But after I took control of it I felt more confident and got into sport a bit more. Obviously now I’m running which is the ultimate challenge for my diabetes. Being an endurance sport it takes a lot out of you – I have to be really careful with the sugars.
Probably when I heard that my brother, Matt, and Dad were going to do the Four Desert series about two years ago. I got into it a little bit then, just doing some small runs, 5kms or so just to see what it was like. Not too much. I didn’t anticipate I’d be doing this event until a bit later.
I started by building up to a few 10km runs. Then I did a half-marathon, and began training through the week until my legs started feeling more comfortable with longer distances. I had a big run with my Dad in early January at the Narrabeen All-Nighter. That was 12 hours of running as a tag team. Unfortunately, I pushed myself a bit too hard, injured my knee and wasn’t able to run for a good two months which was very frustrating. After I managed to get running again it was going well for a while. The symptoms didn’t reoccur until a 12km run that I probably ran a little too hard because it was up and down hills putting a lot of strain on my knee.
I’m having a lot of trouble with my knee at the moment and I haven’t been able to do much training. I’ve been seeing a doctor and had cortisone injections to stop the inflammation. Hopefully, that will be enough to get me through this run. As I haven’t been able to do a lot of training I’m just hoping my willpower will get through. And if I can’t run it, then I’ll walk it. And if I can’t walk it, I’ll crawl it. My goal is to just finish the race.
Yes, a lot. That’s my worry, mostly, about this race, being able to finish or not. As long as my knee holds up I think I’ll be fine.
We met through my best friend. We were friends for about 6 months and then I asked her out. That was one and a half years ago.
She’s just always there for me. She knows a lot about the disease and all the symptoms of hypos. She understands if I’m a bit grumpy if my levels might be a bit high. As I said, she’s just always there for me.
I’m just very, very proud of my Dad. I feel like I owe him a lot because of what he’s done through the Born To Run foundation. It’s just amazing he is able to do this for me and try to find a cure for type 1 diabetes.
(Laughing) Well, he’s a bit crazy! He’s always been crazy. He’s done a lot of weird adventurous stuff; I don’t think there’s a sport or an activity he hasn’t done. He likes to do everything. On holidays he doesn’t relax - he likes to do all the activities. He’s one of the smartest people I know. A very business-savvy person. I admire him a lot.
Mum’s really, really supportive. I couldn’t ask for a better mum. She supports my Dad and me, and the rest of the family. My older brother Matt’s obviously very sporty! He’s one of the Born to Run team. And my sister Laura, who is Event Administrator for the Big Red Run, is like Mum. She’s really supportive, friendly and nice. I couldn’t name one person who doesn’t like her and she’s willing to help out all the time. A very generous person.
I feel very grateful that this is all done for me or because of me. I was recently thinking that a lot of parents set up foundations after their son, daughter or relative has passed away to raise awareness for whatever their condition was. But my family is doing this while I’m here and so I get to see it all come together. I feel so grateful for that.
I’m picturing everyone supporting each other, all the competitors encouraging the other competitors, just getting behind one another. It doesn’t matter if you’re a good runner or not so good runner, everyone’s going to be supportive. Also the volunteers are obviously going to wonderful. It’ll just be a very supportive atmosphere.
Ultimately, I’m hoping for a cure to type 1 diabetes, and also awareness about the disease, to get it out there and get more and more people getting behind the cause.
I haven’t really put much thought into it, but I’ve been thinking maybe I’d be interested in being involved in the Born To Run business that Dad’s set up, and all the events that he’s planning. It’s already quite a family affair, so possibly I’ll get on board with it too.
Make a donation in support of Steve’s Big Red Run.
By Liliana Lees (volunteer from 2013 Big Red Run)
I try to describe type 1 diabetes in one line: it's not easy, just like the disease. It's a disease where the pancreas fails and insulin must be injected up to six times a day to stay alive…every day for the rest of your life. Your body starves to death without insulin.
When my son was diagnosed with type 1 diabetes. He was 18. I have gone from knowing nothing to having an obsession. As soon as the specialist made the diagnosis, I was starving for more information. Every spoken word on TV or radio related to type 1 diabetes I will research further. Anything I see in print, I read twice over.
I have joined every chat room, every Facebook page, every website and every group from all over the world. I search for a cure. There is no cure. Why my son? Why now? What have I done wrong? What could I have done differently? There are no answers.
It's more common in young children. Although rare, it can occur up to the age of 40. Words like Bolus and Basal are thrown at me. What's an endocrinologist? I also thought counting carbs was for losing weight. Science, maths nutrition, medicine - my head is spinning. It's overwhelming.
I am one of the lucky parents. My son is able to inject himself and calculate his insulin requirements. It's unrelenting. There is no break from type 1 diabetes. The countless finger pricks and blood glucose checks. I can't imagine trying to inject a young child or baby. How would you? How could you? But I guess you do. You must.
I've learnt that a hypo can kill, so can a hyper. I quickly learnt to recognise them and treat them both. Any illness needs to be monitored closely for Ketones.
They tell me that diabetes can be managed. Well, yes, it can. However, there is also a huge margin for error. Any mother of a type 1 will tell you of her fears.
This is not a choice my son made. I know his battle and his strengths and weaknesses. He is stronger much stronger than I will ever know.
I can do something. I choose to make a difference. I find JDRF in my many searches. Juvenile Diabetes Research Foundation. They are dedicated to finding a cure and they are all about improving lives for type 1 diabetics. They have many fundraising events. Jelly Baby Month is one of them. In 2012 I helped to raise funds for JDRF at the Grand Prix in Melbourne. In 2013 I will be brave the elements of the Simpson Desert and volunteer at the first ever Big Red Run in July. We will share stories around the camp fire. I would love to hear yours.
Below are some useful links. The last one is an excellent timeline of the history of treatment for type 1.
http://www.jdrf.org.au/
http://www.tudiabetes.org/
http://www.dlife.com/files/Timeline/
Woolworths is proud to support Jelly Baby Month in May with merchandise on sale at Woolworths stores nationally. Please show your support.
With an average of 4 insulin injections per day, or 1460 injections a year, Duncan Read estimates he’s had around 35,000 injections since being diagnosed with type 1 diabetes in 1986. As his blood sugar levels can vary considerably due to being very active and playing a lot of sport, Duncan typically has 7 glucose tests a day, or approximately 2500 blood glucose tests a year. “You can work out the maths,” he states. “But that’s over 60,000 glucose tests.”
Not that this fazes this Englishman at heart, who came to Australia just before the Sydney Olympics. Married to an Australian with two boys aged six and four, Duncan is matter-of-fact about living with diabetes. “That’s just life for me - it’s just part of getting up in the morning, like brushing my teeth, putting my clothes on, it just becomes second nature.”
Aiming to meet his fundraising goal of $20,000 for type 1 diabetes as part of the Big Red Run, Duncan’s also determined to raise awareness, which is one of his main drivers for participating. “I think the strong message for young kids is that once you’ve got it, those first few years are really difficult but it gets easier. And it’s certainly true that teenage years are really hard because you just want to do what all your mates are doing. But once you get used to it, it’s something that can be managed quite easily and the more money organisations like JDRF (Juvenile Diabetes Research Foundation) get to invest in technologies and research that make it easier to manage, the more and more ‘normal’ people with type 1 diabetes will be”. Duncan finishes emphatically, “Although I really hate that word, ‘normal’!”
Duncan still remembers vividly the week he was diagnosed at fourteen with diabetes. “I was very thirsty, quite weak, very pale, not being able to get through a short 15 minute walk home without going to the toilet first. I was drinking a large glass of water before I left school, and before I got home I’d be wanting to go to the toilet and drink something again”. His mother picked up on these classic signs of diabetes and the doctor diagnosed Duncan instantly with “a finger prick and a glucose test. I was in hospital for a week and that was the week that changed my life,” he recalls. “And the way I lived. It’s part and parcel of me now.”
He goes on, “Being a teenager you don’t want to be any different from your friends. Part of what drove me was just wanting to be like everyone else.” Duncan didn’t want to stop doing sport or stop eating the things all his friends were eating. “I’ve heard this comment from other people: you don’t want to let it beat you. You’ve just got to work your way around it.”
Duncan feels compelled to highlight the positive benefits of living with type 1 diabetes. By doing the Big Red Run, he especially wants to be an example to diabetic children that being motivated to stay fit and healthy will help make living with type 1 diabetes more manageable.
He believes a healthy lifestyle is key for type 1 diabetics. “There’s a bit of thinking around what you’ve got to do and you have to be careful about what you eat, but the way I look at it is I’m probably fitter for having diabetes than I would have been from not having it. I know I would have eaten more junk food,” he reasons, “drunk lots more fizzy drinks and I wouldn’t have concentrated so much on my diet. Now I’m very careful about my diet and the impact of exercise. I understand it and it’s a real positive health benefit.”
Duncan had grown up with sport, a love of which he shared with his father. His fear was this would change. He feels lucky his diagnosing doctor said there was one thing he could do to give him good health going forward. That was to keep doing sport. Duncan recalls, “My doctor said, ‘the rest won’t necessarily look after itself but it will kind of fall into place if you do that’. He encouraged me to get out there and keep physically active.” His doctor emphasised it wouldn’t be easy with blood sugar levels to test and manage, eating sensibly before exercise, needing to be careful, but suggested it was the one thing that would really, stand me in good stead, which was music to my ears!” states Duncan. “I just wanted to go out then, play sport and be healthy. Of course, you do go through ups and downs but sport has been a big part of my life.”
The other important aspect for Duncan was having role models with type 1 diabetes. “When I was diagnosed there was an English footballer called Gary Mabbutt, who demonstrated that with type 1 diabetes you can still do and achieve a whole lot so that was really positive.” Duncan sought out other role models later in life. “Steven Redgrave is a five time Olympic gold medallist rower. He’s also been a big inspiration to me and like Gary has put a lot into raising awareness of type 1 diabetes. My heroes have shown you can live a fairly normal, in fact, quite an extraordinary life.”
For young diabetic Australians, Duncan admires Brett Stewart who has type 1 diabetes and plays for Manly Sea Eagles. “He does a lot of work through his profile, trying to raise funds to make pumps more accessible for young kids with diabetes, giving something back.”
Duncan highlights the changes he’s experienced since he first had diabetes. “Blood testing has come on quite significantly. I used to have to do my blood tests near running water. You used to have to test your blood, rinse the strip, wait 30 seconds, and then you’d find out what your blood sugar was. The monitor would be quite big as well. Now it takes 3 seconds; a finger prick blood test which you can pretty much do anywhere, standing on the side of a rugby pitch or when I’m half-way up a mountain running somewhere.”
He also recalls the old days of insulin injection. “You used to have to draw up proper old-school injections where you’ve got a vial of insulin to mix, draw it up into a syringe and then inject yourself.” Now he carries insulin around in a pen in his pocket. He continues, “The insulin used to take quite a long time to react. You’d have an injection at set times of the day but then wait half an hour before you started eating. Of course insulin technology has come on in leaps and bounds since then. I still inject four times a day but kids now have options to use insulin pumps. They are really convenient because they’re continuously attached and they just dial up how much is needed and the insulin is delivered almost instantaneously. Doctors are finding them much better for managing blood glucose more effectively, and no need for so many injections. They’ve been some pretty significant changes there.”
Duncan has great admiration for Greg Donovan and the Born To Run team. “What those guys have done, 5 of these events in 5 different continents absolutely blew me away. And it was a no-brainer for me to get involved and help in any way I could.” After raising money for type 1 diabetes doing the 100km Alpine Challenge in Victoria last year, Duncan read an article written by Greg. “I just couldn’t believe the coincidence,” he enthuses. “I thought ‘no way is this guy doing ultra-marathons to try and raise money for type 1 diabetes’ - that was essentially what I’d just done on my own; fundraising for type 1 diabetes with an endurance event. I just thought the fit was perfect so contacted Greg.” Duncan happened to be cleaning out his gutters when Greg phoned. “I was sitting on my roof just listening to Greg’s story and being inspired by what he was trying to do for his son, Steve, who has type 1 diabetes. From that moment on, I’ve really thrown myself into it to try to raise money, and get myself ready to take part.”
Duncan pays tribute to his “usual suspects” of family and friends who have always have been incredibly generous raising funds for type 1 diabetes. He’s overwhelmed by the level of community support, “I’m almost moved to tears just thinking about what other people have done for me given I’ve made the commitment to do the Big Red Run.”
To keep him inspired while running he’ll be channelling that community spirit. “I’m using the support of friends and family and everyone who’s contributed by writing their names on a bandana,” he reveals. “I’m writing everyone’s name down so that when I’m in the depths of despair, feel I can’t go on, that my legs are about to give up, I can just grab that and have a look at all those people who are behind me.”
He says because of the magnitude of the Big Red Run he has set his fundraising target much higher this time. “I’ve been hitting up corporate sponsorships and small businesses and people who can contribute ‘in kind’ such as through auctions and raffles for donated prizes. Some of my friends are now more are aware of what I’m doing and why, and others didn’t even know I had diabetes. As more and more people become aware they say ‘I can help, I can do this and that’. I think the scale of the Big Red Run has changed everything.”
Duncan believes there’s a potentially higher degree that his sons may be predisposed to having type 1 diabetes. He emphasises, “While it’s not necessarily a hereditary disease, if they get it I want their lives to be easier than mine. Or for other kids who are being diagnosed right now at age twelve, thirteen, fourteen – it’s about a better future for them,” he says. “If that means a cure, fantastic, but it also means continual progress insulin technology or transplants or a whole range of things.” He’d particularly like to see progress on continuous blood glucose monitoring which is non-invasive or less hassle. “I know they’ve developed it, but it’s quite expensive to access at the moment. With convenient continuous monitoring it would be much easier for kids to play sport or get through the roller coaster of blood sugars that I’ve spent 27 years trying to master.”
Duncan’s been preparing for the 250km event over 6 days through careful control of diet, “and also running,” he laughs. He’s been taking advice from physios and doctors and relying on his running experience although stresses he’s done, “nothing anywhere near this!” He’s been, “Just getting out there and doing short and fast runs and some very long and arduous runs and walks to just get used to time on my feet.”
He’s also been keeping track of his blood sugar levels saying, “I’m not completely comfortable about entering nearly 6 marathons in 6 days in the desert. I have some fears about how the diabetes is going to cope but also how my body’s going to hold up. Getting to the end of the line is a real challenge for me. Getting to the start line’s been hard but I’m there, nearly,” laughing, “and I just want to finish. I don’t really care about times. If I have to walk a few days, that’s fine.”
Duncan acknowledges he couldn’t have taken this on alone. “As a diabetic I really need someone there by my side.” That someone is Tom Todd who’s been training with Duncan and without whom Duncan says, “I don’t think I would have entered because I needed someone looking over my shoulder to make sure I’m ok.” When running with Tom, they usually run slowly enough so they can talk and motivate each other. But most of the time, he says, “when I’m training alone I just get out there thinking about a holiday I’ve had or about my wife and my boys, or even about an issue at work. I occupy my mind with things that distract me. I just go off into my own world.”
The fact that the event is Birdsville was an added incentive for Duncan to participate. He’s spent time in parts of Australia including the Northern Territory but never been to outback Queensland. He’s looking forward to “seeing the Birdsville pub and experiencing the community feel that Greg and the team have built up. It’s an event that’s being run the first time in Australia and that’s a big part of why I’m doing it too.”
Ultimately, Duncan’s doing the Big Red Run challenge because he sees type 1 diabetes as something that doesn’t have to beat you. His message to kids with type 1 diabetes is not to be put off by what you can’t do – think about the stuff you can do and have fun trying. He elaborates, “You can get through as a healthy individual and that’s why I want to do the race, get through it and say ‘up yours diabetes’! I’ve just done 250kms in 6 days!”
If you'd like to sponsor Duncan, Visit Duncan's Fundraising page
Keith Lill is a 28-yr-old soldier with the Australian Army based in Albury-Wodonga with his wife and 6-month-old son. Keith is competing in the Big Red Dash. 12 November 2011 is a date he will never forget; the day he was diagnosed as having type 1 diabetes, which took him completely by surprise and which he knew nothing about.
There were two reasons initially. Firstly, it was a good way to get my trade as a diesel fitter. I’m originally from the wheat belt in WA, which was in the middle of a drought when I was leaving school so farming wasn’t really a viable option. And being a soldier appealed to me at that age, it was something I wanted to do. I’ve had a great career to date. I’ve experienced everything I wanted to.
I’d just returned from an Army operation in Africa, and was feeling pretty unwell. It felt like I was hung over all the time, but I obviously hadn’t been drinking. I’d lost a lot of weight; about 12kg over about 12 weeks. I had a lot of tests for all those nasty things you can get overseas. Just before I’d come back from overseas I’d had a really bad virus. Whether it was a link or not, no one really knows. We have no family history, I’m well past being a child or teenager, and I’m not in any of the risk categories for type 2 diabetes, so I was really out of the ordinary. There is only one other person I know of apparently in the Defence Force who has type 1 diabetes so it’s not something the doctors here are used to looking for in their patients.
No, I was really ignorant, as a lot of people are. It was shattering at the time - it was a really big shock. I wondered if it meant the end of my career and there were many other things I had to sort though. A lot of people say similar sorts of things. But then you sort of grow used to it, it becomes part of you, and it’s not something that you dwell on all the time.
Definitely. I was in a high operational unit for the previous seven years and now I instruct at a technical college. I’ll no longer able to be deployed in any war zones or anything like that. But the Army has been good with maintaining my employment given my situation. They’ve gone out of their way to ensure that I haven’t been left out in the cold due to it.
I'm lucky enough that with my active lifestyle and career the disease is very manageable although I certainly have days where I struggle. I require 6-8 blood tests and 4 injections a day but as yet I haven’t had any other implications as a result of my diabetes.
When you’re first diagnosed, you’re issued with an educator and an endocrinologist and a small team that helps through the initial stage. They’re really good for providing all the education you’ve got to learn pretty quickly - that was all great. Now I see my endocrinologist once every two months for about a 20 minute appointment and that’s about it really.
That it’s not a curtain on your lifestyle. That’s the major thing I had trouble dealing with.
You have to do some things differently but after a while it becomes pretty natural and all the things you love to do you can still do, albeit some you have to do a bit differently. For instance, I’m running in this marathon, and I still play AFL at a reasonable level. I still do all the things I used to do before I was a diabetic. I’ve just got to take a few more precautions before and after I do things like that.
I want to try and give some support to JDRF (Juvenile Diabetes Research Foundation) and the research team. They looked after me so well initially after my diagnosis it’s nice to be able to do something for the foundation. It also works in well with my individual goals to do the marathon. A lot of people who don’t understand the disease would think it’s sort of undoable for someone with type 1 diabetes, but it’s great to be doing something like this to prove to yourself and everyone else that it’s not such a limit.
I’m not a runner by any means – it’s a huge change from my normal training. I’ve never run a marathon, or even a half-marathon. I’m lucky enough that my career as a soldier has always involved training toward some goal; this is just a different one. I’ve done a lot of running, that’s about it really. I suppose you have to run to prepare for a marathon.
My plan of attack has changed a lot over the past month or two! Originally I was aiming to complete the run in about 3.5 hours but then I had a closer look at the track and the sand – whatever time I run I’ll be happy with. It’ll be one of the more physically demanding days of my life, if not the most physically demanding. I’m simply expecting to be surprised. There will be a lot of unknowns in the event which is good. I’m not anxious or anything, just excited.
I suppose the big one is the cure, and the cause but also the vaccine being trialled, especially for kids. It’s not too bad for someone my age in managing a condition like this, but it’s a lot of maths and understanding of food and your body and I can’t imagine how hard it must be for a young child or even a teenager to start to be trying to control their diet at that age.
The Army’s supplying me with a support vehicle, and I have a ‘support crew’, although that’s pretty loose terminology. It’s a way of describing taking three mates with me (one will be running with me). We’ll see a few things over the three day drive to Birdsville which will be great. Hopefully on the trip back I can just sit in the back and stretch my legs!
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