Run Veerle Run “Don´t let it limit your dreams” written by Christine Hinterlang
Veerle Vanhuyse talking about her Type 1 diabetes and running marathons
There is something humbling about meeting Veerle Vanhuyse. She has two daughters, works a part-time job and still finds time to run marathons. We all know that a marathon is a metabolic challenge for anyone, but Vanhuyse runs in spite of suffering from Type 1 diabetes. In Type 1 diabetes the immune system destroys the insulin-producing beta cells in the pancreas. Thus not enough insulin is produced. However insulin is important. It is the hormone that regulates carbohydrate and fat metabolism, by adjusting blood sugar levels. Vanhuyse invited me to her apartment in the fourth district in Vienna to do the interview. When she opens the door she is very warm and welcoming. She is tall, down-to-earth and confident. The kitchen is decorated with bunting flags and balloons. “My daughters both have their birthday on the same day,” she says, smiling. I sense her family is important to her. The flat is elegant, but has the right mixture of style and simplicity to feel homely. “My husband's company pays for it,” she says in a charming Flemish accent, as I comment on the beautiful, large 19th century windows. Veerle Vanhuyse was diagnosed with type 1 diabetes when she was sixteen. “I had no idea what this is about. I was young. I did not realize what the disease was about and how it was going to affect my life. It is very blurry to me, it came as such a shock. You get so much information from the doctors about the diet you need to follow and the things you need to change in your life and stick to from that moment on. So you just take all that home after being in hospital to learn how to inject yourself with insulin and then you start your life as a diabetic. I had to inject myself three times a day. The first time it took me for ever. I think I was there for about half an hour before I had the courage. A couple of weeks and that is it, you know how it works. By now I have an insulin pump.”
In 2005 Vanhuyse was a young mother, “a huge smoker and not a sporty person whatsoever”. She was one of the many people who purchase memberships at various gyms and fitness-centres over the years, but do not succeed in working out at any of them more than two or three times before giving up, in spite of having payed for the membership. “Then I saw an advertisement in a bakery in Belgium on a Saturday. 'If you think you should start sports but it never happens. Come to this place on Sunday. Running for beginners.' it said.” I hadn't told my husband and I had a small baby. But, on that Sunday morning, I woke my husband to tell him that he had to watch the baby, because I was going to run. This was me, the smoker, going for a run. And my husband later told me, that he literally thought that he was dreaming.” She admits it was very difficult for her to go running twice a week. But the atmosphere and the fact she was running with people from her neighbourhood, helped her to stay motivated. After many weeks of training she reached her goal of running 5 km. However, she says “the real changing point was only after we moved to the USA for my husbands job. He was very busy with work and the running became an outlet. Suddenly running was fun.
Then one of my friends challenged me and asked me why I don't do the half marathon. In the beginning I thought the idea nuts. It is funny to see that it is a mental thing. You have boundaries and you always to push them. And by now running is therapeutic for me.” She never let the fact that she suffers from diabetes stop her. “Of course it influences my running and the other way round. It is there and I have to take care of it. It takes a lot of work to be able to do the running.”
Vanhuyse ran the half marathon in Atlanta 2010, another half marathon in Vienna 2011 and finally the Berlin Marathon 2012. I am wondering what influenced her decision to run a full marathon.
“I originally did not think it is necessary, it was not important to me. But one day I was on holiday in Andalusia. I stood on a rooftop of a hotel in Sevilla and suddenly said: 'I want to do a full one'. It came out and I didn't know where it was coming from. There was nothing that inspired me, I just suddenly had this vision that I want to do this.” Once back in Vienna, Vanhuyse looked up different marathons and was thrilled to be able to sign up for the Berlin marathon only four months before it took place. When she ran her first half marathon in Atlanta, Vanhuyse suffered only from Type 1 diabetes but by the time she signed up for the Berlin marathon, her health had suffered another blow. She had been diagnosed with arthritis and, due to a conversation with her doctor, was sure that Berlin was going to be her one and only marathon. “So at the finish it was tears of joy and tears of sadness. It was only later that I talked to my doctor again and found out it had been a misunderstanding.” Her doctor clarified that he thought she would not want to run any more, due to being in too much pain. But if she did want to run, of course she could. I ask if any of her doctors are of the opinion that patients with Type 1 diabetes should not participate in extreme sports.
“No, my doctors say that I am my own expert. With the diabetes and the running I get only support. Its only about the arthritis I have heard other opinions. I have a friend in Belgium who coincidentally is a doctor who knows that I very occasionally get a little cortisone for my arthritis. And I don't take it lightly. I try to postpone this moment as much as possible. When I was training for Berlin and was running 20 and 25 km it got worse and twice I had a cortisone injection. He disagrees with this.”
Vanhuyse employs different strategies to manage her diabetes. She has an Insulin pump which constantly provides her with insulin. This system replaced injecting herself with insulin. She receives certain amount of insulin per hour. She changes the settings according to her needs. “When I eat, I need more and when I run I have to take it off. On the other hand I have a Dexcom C(ontinuous) G(lucose) (M)onotoring system. Which helps me monitor my sugar levels. Of course it would be great if they could communicate with each other. The Dexcom helped tremendously with the running. I got it after my second pregnancy, coincidentally this is also the time I started running more often.� Running with Type 1 diabetes takes a lot of extra planning. All runners with Type 1 diabetes have to monitor and adapt their blood-sugar levels before, during and after a marathon. “From a couple of hours before the marathon I have to start watching that my bloodsugar levels are high, but not too high. When I run, I watch them all the time. When I am to low I bring them back up. If I am going back up. I can see the arrows, which is nice. But if my blood-sugar levels are too high, I may have to take a tiny bit of insulin.
But I really have to watch that I don't take too much, as I have to avoid going too low. A hypo (hypoglycaemia) during a run, would mean having to stop completely, till I recover from it.” We have to remember that hypoglycaemia (blood-sugar levels below 70 mg/dL), can result in various symptoms such as fatigue, headache, shaking as well as disorientation. And in severe cases can result in convulsions or coma. “The Dexcom tells me when to be careful. It shows me an arrow and a graph but is a little behind. It may still show me a good level when it is actually already lower. This is why I still have to stick my finger while I am running too, to know for sure.” Training for a half marathon or marathon undoubtedly takes a lot of discipline. As does managing Type 1 diabetes. I ask if having discipline in one area helps with the discipline required for managing another. To Vanhuyse they are two completely separate things. “I am a bit sloppy with my diabetes. I really take care of my diabetes in a way. When I eat something sugary I do take my insulin, of course. But I do have my peaks. I have way more character with my running.” Has her Diabetes been a limiting or motivating factor?
“Definitely more of a limiting factor. There is nothing specific, I still do what I want to do, but e.g. if people talk about a very adventurous holiday or vacation, like going a desert or a huge national park. Then I immediately make the link, 'what if something happens and I am too far away from the hospitals'. Luckily I am not really craving to do any of that. But I would just say it is limiting my freedom because it is there all the time.”
Vanhuyse is married and has two daughters age 11 and age 6. She says that the fact that she was diagnosed with diabetes as a teenager has not changed the way she interacts with her children. The mood changes and her voice becomes more serious. “The only thing that would be really terrible for me to imagine is if my kids were diagnosed with diabetes I. Because I know how hard it is. People think, 'Ah, it is just diabetes, that once it was a bad disease and people died from it.'
But people still die from diabetes. Sometimes people don't realize how hard it is from the outside. They just see that I cope and don't talk much about it. They have no clue what goes on inside, that diabetes is a difficult disease.”
Vanhuyse raised money for Type 1 diabetes research before the Berlin marathon. It was a last-minute decision just 4 weeks before the marathon. She raised 1,700 Euros but regrets not having started earlier. The money raised went to Belgium, to a department at the University of Leuven (KUL) which is researching a cure for Type 1 diabetes. “Belgium is a small country but they are really on the world-map in diabetes Type 1 research.”
When asked about her upcoming events and what her goals are Vanhuyse first talks about her arthritis. “It is not an improvement, let's be honest, the more steps, the more runs I do, the worse it is for my bones. Even though I know, taking the bike or swimming would be better as the impact is not so huge. Running is my thing. I love it and will keep running.” She goes on to talk about the possible option of having surgery. “At first I was worried that this would be the end of my running. But it may not have to be. There is an Austrian footballer who has had this surgery, they took off the sick bone. He now has pins connecting his bones and is still playing.” She is planning to run two half marathons. “My next full marathon will be in New York.” Her face lights up. “I almost get emotional talking about it. Because I am so excited. As long as my pain allows me to run – I will run.” She laughs, “I am even thinking about London 2015 already. The only disadvantage is that it is so expensive. My husband is very supportive. Running for a hobby, recreational is fine, but as soon as you enter competitions it gets expensive. You have flights, you have hotels, a start number, a trainer.” A few times a week Vanhuyse needs to train. She usually starts her runs in Belvedere and then runs to Arsenal. She likes doing 5 to 8 km there. “There are few cars there. It is so quiet. It is not fancy, but very calm. On the week-ends if I do a longer run, I enjoy running in Prater. I think another nice but more challenging place for summertime would be Kahlenberg.”
Vanhuyse works for a Vienna-based company. It is called mySugr and is an app for apple and android. It enables people with diabetes to manage their blood-sugar in a playful way. The Companion app is for adults and the Junior app for children. It includes a diabetes log, but goes beyond that. The user supplies the app with as much information as possible. “E.g. you wake up and test your blood-sugar, you tell the app how many carbs you want to eat, how you feel, if you are sick, if you have your period, if you are nervous or angry. All these things influence your diabetes. If you monitor your current situation, you can go back to the information for a future situation.” The user can also add pictures of a specific meal he is eating to help him remember. The data collected can be also viewed as graphs, which help the user adjust his or her future insulin needs. “You can also do challenges. There are different ones e.g. Testing your blood-sugar a certain amount of times in a day. If you do that you can play a game. And you can tame your diabetes monster. The monster jumps around and makes noises.” The company receives numerous e-mails through customer support telling them how much the app improves the lives of their customers. They also receive feedback from people who struggled hard with managing their diabetes for years, prior to using the app. The success stories include improvements in Hba1c levels. The Hba1c is measured primarily to identify the average plasma glucose concentration over prolonged periods of time. It gives us a better idea how a person is doing, overall with managing their diabetes. “It is a wonderful app”, says Vanhuyse. “I do not say this because I work there. I really mean this.”
What does Veerle Vanhuyse do when she is not working, training for a marathon or spending time with her family? “There is always something to do round the house. Sometimes I feel, I should force myself to sit down and read a book but I always feel there is something else to do.” A warm smile lights up her face. “And I also love shopping.” What is Vanhuyse's message to someone who has been diagnosed with Type 1 diabetes? “You shouldn't stop living. E.g. if you want to do something like me, running the marathons. Of course it will be harder for you than for someone who doesn't have diabetes. Because for you it is diabetes and the running. For them it is just the running. Don't let it limit your dreams but I also mean that on another level. Don't put me on a diet. I love eating, even french-fries and mayonnaise.
But you have to keep watching it, keep on top of it, and under this umbrella, you can do whatever you want.” Article written by Christine Hinterlang
Read more about Veerle New York Marathon on her website
Photography by Owen Kilgour