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Thursday, February 18, 2010

Nick's Diabetes Story

Nick Jonas is a personable boy of sixteen who happens to be a member of the Jonas Brothers Band, a group of three brothers with a devoted following of very passionate young fans. In November 2005, Nick Jonas found out that he had type 1 diabetes.

A month or two before he was diagnosed, he began to notice “the usual symptoms: losing weight, the bad attitude, being thirsty, going to the bathroom all the time.” He lost about fifteen pounds in two to three weeks, and “it was just insane. I had a terrible attitude, which was totally odd for me because I’m actually a nice person. Especially being on the road around people all the time, you have to keep that positive energy going. And it was hard.”

Nick took some time off from the band’s tour to see a doctor, who packed him off to the hospital immediately when she heard his symptoms. His blood sugar was over 700. “For someone who had no bad medical history ever,” he says, “to suddenly have the shock of diabetes was a bit overwhelming in itself, and then I had to learn all about it, learn all these things in such a short period of time. All of it was crazy. I also wondered if I could continue making music...but I had the support of my friends and the band to be there with me. My dad was back at home with my three other brothers, but my mom stayed at the hospital with me every night.”

The day after Nick left the hospital, he performed in a concert and jumped right back into the flow of doing shows and touring. He started out taking multiple daily injections of NovoLog with Lantus, checking his blood sugar about twelve times a day. He says, “When we were on the road, I’d be in the back of the band trying to give insulin shots and manage my diabetes, and it was just too hard. I was getting frustrated with it. I knew that I needed something different, a solution to the problem, which in fact was the OmniPod [by Insulet]. It’s really changed my life in a big way. I started using it in about April and absolutely loved it. And all my friends think that it’s a really cool device.” He says he was shown other pumps, but he adamantly refused them all because he wanted an OmniPod. He says, “Before I got the OmniPod, I heard about the other ones and they showed me examples and prototypes, but I was like, no, I want this.”

In his OmniPod, Nick uses NovoLog insulin. When he was touring and performing outside at up to 100 degrees last summer, he could set the basal down a little bit so he wouldn’t go low. He reports that he hasn’t had too many episodes of low blood sugar. “The past couple months have been awesome for managing my diabetes, and I’m doing well. My A1c has come down a lot. It is in about the 7% to 8% range, and it was 11% to 12% when I first was diagnosed.”

“What’s awesome about the OmniPod,” Nick says, “is that it works as a FreeStyle meter, so I just put the FreeStyle test strip in it. He tries to check about nine to ten times a day, and his blood sugar is usually 150 to 175 mg/dl. He acknowledges this is high, but because he is so fit and active and has a tendency to go low, this is what he has been advised should be his normal range. His friends are very supportive. “I’ll check my sugar and they’re all concerned, what’s it at right now?” He’s thought about using a continuous monitor and may be using one soon.

Nick doesn’t follow any special diet. He can pretty much eat whatever he wants as long as he makes sure to take the right amount of insulin for it. He is a huge steak eater: “I could eat all the steak in the world,” he says, but “I’ll eat pretty much anything.” He notes that with the OmniPod, he can enter the carbs and it’ll give him a suggested amount of insulin. It also has a food database, in case he ever has a question about how many carbs are in something. When he gets low, he prefers to drink orange juice or some other liquid because they work so quickly.

In March 2007, about a year and a half after his diagnosis, Nick publicly announced that he has diabetes at Carnival For a Cure, in an appearance sponsored by Insulet. He had known from the get-go that he knew he wanted to go public with his diabetes; it was simply a matter of when. He notes that he’s still new to diabetes and feels “like a freshman coming into a senior’s class.” He waited until he felt comfortable with managing his diabetes before telling everyone about it. Of course, he didn’t test in public until after his announcement, but now he tests wherever he is.

As an example of the intense scrutiny to which he is subjected by his fans, there is now a game on line called “Spot the OmniPod, ” in which fans examine old photos of him, trying to spot his pump. Some of them write his name on their arm where he wears it. Everyone in his whole family has a fansite, even his father and his little six-year-old brother.

After Nick announced that he had diabetes, he says, “I found it amazing just how many people know somebody with diabetes or have diabetes themselves. We’d get these stories about how some of the kids were really afraid to tell their friends and how my situation gave them courage to do that. The fact that I’m able to have somewhat of a spotlight to share my story, I just feel blessed.” He carries a supply of guitar picks in his pocket, and “whenever I meet another diabetic buddy as I call them, I give them a pick, a cool little thing.”

Nick appreciates the fact that “I have a platform to be able to share my story. I have this passion to be able to share with young people my age and be a positive light in a situation that might not be so positive. I’ve heard stories about kids who were in depression because after they got diagnosed they were just so upset about what was going on. That just touched my heart, and I wanted to be able to do something about it. I hope that I can be that positive light.”

Asked to describe the biggest hassle of diabetes, Nick tells about the times when it’s been a long day, and he has to go back and deal with some of the annoying things about diabetes. When he gets a low blood sugar, “it’s like, oh, what do I do, and you just get kind of overwhelmed. That’s one of the biggest things for me. And also when people don’t understand too much about diabetes and you have to explain. I try to make it work. I say, well, it’s a little bit different than you might have heard.”

Being on tour adds a dimension of difficulty to managing his diabetes because the schedule is “kind of insane.” It’s getting easier now because he’s been doing it a little bit longer. “It’s a team effort and it’s all good,” he says. His mom travels on tour with him. His mom “is awesome.” She helps him with everything he does, especially in managing his diabetes. He takes supplements and vitamins because his mom favors them. He describes his parents as his biggest influence, totally amazing people whom he’s blessed to have in his life.

He knows that diabetes “is a huge part of my life and I can’t just forget about it, obviously. I have to keep taking care of it and managing it, and learning more things about it. Hopefully one day they’ll come up with some type of cure, and I hope I’ll be one of the first to know about it.

Nick comes across as extremely well-spoken and mature for his age. He describes himself as “more the quiet guy in the bunch,” not the kind of person who will just go up to somebody and start a conversation. But “I consider myself somewhat of a leader, hopefully.” He is planning to be very involved with the diabetes community. “This is just the beginning of what’s to come with all this.”

To newly diagnosed kids with diabetes, Nick would say, “Don’t let it slow you down at all. I made a promise to myself on the way to the hospital that I wouldn’t let this thing slow me down and I’d just keep moving forward, and that’s what I did. Just keep a positive attitude and keep moving forward with it. Don’t be discouraged.”


He Became a Hero, the Second He Raised His Hand

"Don't you ever, EVER let anything bring you down!"

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