Discovering MODY-3 Diabetes in Canterbury

When you whisper to the universe that you’re looking for something – whether it be love, fame, or your car keys – it’s a rare and pleasant surprise when it is somehow effortlessly set in your path. That was the case with Brendon.

We hadn’t yet told anyone in our Christchurch house that we ran a blog on traveling with diabetes. And we hadn’t really seen too much of Brendon, the guy who lived in the self-contained unit in the backyard. Our Australian housemate, Scott, referred to it as a “granny flat.” We’ve learned that in New Zealand and Australia, it’s relatively common to have a self-contained unit or “sleep-out” in the backyard. It’s primarily used to rent out to travelers, accommodate visiting relatives, or as a nearby independent living option for elderly parents, hence the name “granny flat.”

Brendon was none of these, however. He was just a Christchurch native looking for a quiet place to live. But he had his own fascinating story to tell, which we discovered after a week or so, when I could no longer stand someone living in our backyard without knowing anything about him.

“That’s because you’re nosy,” Damián said.

“No, that’s because I’m nice,” I retorted. “Midwest nice. Look it up. It was invented in Wisconsin.”

“I doubt it.”

“Well, it could be worse,” I explained. “In university, we baked chocolate chip cookies for all of our neighbors when we moved into their neighborhood so that later we could throw parties and they would feel guilty about calling the cops.”

“See?” Damián said. “That’s not nice. That’s manipulative.”

Anyway, I went to over to say hello to Brendon, who was sitting outside painting flower pots and arranging paua shells for his small garden. He was a friendly conversationalist. At some point, his blue bracelet caught my eye. In large, white letters, it read: Insulin Dependent.

“Brendon, are you diabetic?” I asked, probably with a bit too much excitement in my voice. “I’ve just noticed your bracelet.”

He was, he admitted, and he actually had a rare form of diabetes that not many people knew about. He was exacty the kind of person we were interested in talking to and he had been, quite literally, “in our backyard.” I told him about our blog and he agreed to be interviewed. What follows is the result of a long evening conversation between Damián, Brendon, and myself where Brendon explains to us the nuances of MODY-3 diabetes.

Brendon

When were you diagnosed with diabetes?

I was diagnosed in 2003, when I was living overseas in Moscow, Russia. It was pretty hard. I just progressively started getting unwell. I had common colds that wouldn’t go away until finally I was hospitalized with chronic bronchitis. They just picked it up from the routine sugar test that I had high sugar levels. I told them that I had some family history; my father and brother were diabetic. And I just said to myself, well, there is no surprise here. I know what’s going on.

At that time, I was diagnosed with type 2 and put on oral medication. I didn’t respond well to the medication and my diabetes was poorly managed. I think part of that was living in Russia. I didn’t have the kind of support that I receive now in New Zealand. And I didn’t really take the diagnosis seriously at first. I was told to stop drinking and not to eat certain things and I stuck to the diet for awhile but it was really problematic to find the food they were telling me to eat in Russian supermarkets.

It wasn’t until I came back to New Zealand in 2007 and the oral medication started to have more effect because I had a proper diet and more access to recreation. I was on my mountain bike and doing a lot of hiking, which was really good for blood sugar control. But slowly, maybe around 2010, I just wasn’t really responding to oral medication. It had a bit of a short-term effect, but that was it.

So I went to see a specialist at the Christchurch Diabetes Center, which is a unit of the Christchurch Public Hospital. There was a doctor that specialized in MODY-3 diabetes, which is a type of genetic diabetes caused by a mutation in the HNF1 alpha gene. She had reason to believe that I had been misdiagnosed as a type 2 diabetic. It was true that I did not fit the profile of a type 2. I was slim, I ate well, and I exercised.  She wanted to test me for MODY-3 diabetes, which is not possible in New Zealand. But she got the funding – $800 – to send my blood sample to Brisbane, Australia where they test for MODY-3. The result came back positive.

Only 1% of diabetics have the genetic form that I have. But because it was only identified in the 1990’s, they don’t know if that 1% is a true indication. There are many people, like me, who are being treated for type 2 that could actually have MODY-3.  This MODY-3 specialist changed my treatment completely. She put me on insulin injections and told me to keep up my exercise and diet and from then on, I was beautifully controlled.

What was your reaction?

I knew the doctor was pretty sure that I had this rare genetic form and when I thought about what she was saying, it made perfect sense. So when the results came back from Australia, I wasn’t surprised at all. I thought: Thank God for that. Because up until then, I was at a loss for what to do when the oral medication just stopped working. At that time I was starting to get a bit of anxiety and depression about it so having a new diagnosis was a really big relief for me.

How would you evaluate your personal health care experience in New Zealand?

It’s been absolutely amazing, but I’m one of the few diabetics that actually access the diabetes center in Christchurch. There is just amazing care in New Zealand. And it’s public. It’s completely free – everything – including the psychologist. You can see a diabetes nurse whenever you would like too.

I just think not enough people are aware it exists. It was a friend of mine whose friend was a doctor…He was the one who told me that I should go there. But my own regular GP (general practitioner) and every GP I had before that never told me to go there. Even when I was starting to get out-of-control sugar levels. Not once did any GP tell me to go to the diabetes center. So I don’t want to sound nasty, but I suspect that since if I go to the diabetes center and it’s totally funded, the doctor loses that $70 appointment fee. I don’t know whether the GPs are protecting their own clinics and not sending people there. I don’t know. But it surprised me that it took a friend of a friend to make me aware that the center existed.

In the beginning, I struggled with needles too. I couldn’t get the insulin pump because it cost $10,000 NZD at the time and it wasn’t covered by the government. But they had an in-house clinical psychologist for free and they helped me get over my needle phobia. I just started using needles like you take a sip of water from a glass.

Yet again, people aren’t accessing these resources. It’s probably a bit of a New Zealand thing. From what I’ve experienced overseas, most people pay a lot more attention to their health. Going to regular check-ups is just what they do, but not here. The staunch Kiwi guy – he’s out in the paddocks looking after animals and chopping down trees. He doesn’t want to know about a psychologist at the diabetes center. It’s just not in the make-up of New Zealanders.

Christchurch

How do you access your insulin and what type of insulin do you use?

I’m using two types. On a regular basis, I take 16 units of Glargine, which is a slow-acting basal insulin. And then I have Apidra, which is fast acting. I find I only need to use that after a big meal or if I haven’t been exercising for awhile or if I’m very naughty and I have some chocolate or cake or something.

You have to be careful with the fast-acting insulin because I’ve had three or four incidents hypoglycemia which required ambulance care. I once had one at a hotel in Greece. I called the reception at the hotel and somebody came and the next thing I remember, I was at the clinic.

I’ve had experiences from the lows to the real extreme highs. On other occasions, people I don’t know just called an ambulance because I collapsed. They didn’t know I was diabetic on a low. I could have been epileptic. I could have had a heart attack.

Did that inspire you to start wearing a bracelet?

Yes. It did. So next time they know.

When I was in Greece, I went on two lows and then I went on that massive high. But the first low I went on, my friends saved me because they knew I was diabetic. I just started sweating. It just started pouring off my face at dinner. And my hair was soaking wet. I said, “Shit, get some sugar. I’m going down.” They had a number of one of my friends in Christchurch and they called and said, “Oh Brendan’s really unwell. Is it his diabetes?” And my friend told them what to do. They just got some coffee sugars, put it in a glass, stirred it up and gave it to me and I came right. I finished my dinner with them and we all went home.

Do you think the people of your country are well informed about diabetes?

I find the awareness here in New Zealand is just zero. I was in the hardware store just a few weeks ago and I hadn’t had breakfast yet. I was planning to eat but we had to go to the hardware store to get something quick. I felt like I was on a low, very drunk, I couldn’t really walk, and so I told my friend to get some sugar. There was a little café and we went up there. He said to the staff, “Can we have some sugar please?” And she just looked at him. And he said, “My friend is diabetic, can we just have something with sugar?” And she said, “Umm diabetic? Don’t you mean something with NO sugar?” So my friend just got really angry and grabbed something off the counter.

Now at work or university, I carry an emergency glucagon injection and some glucose tablets. At university, I’m registered with the health center and they know me. So if anybody identifies me as collapsed, they’ve got the glucagon and they know to administer it. And I tell as many people as I know. It’s really easy, there are instructions on the case, and you don’t even have to take my pants off. Just put it straight into my leg, right through my jeans.

I just realized that people don’t know. And if they don’t see my bracelet, how would they know? Even though my father is diabetic, he doesn’t discuss his diabetes with me. At all.

Even I kept it a secret for a very long time. I didn’t tell my closest friends because I didn’t want them to think that I was cripple or something. I didn’t want to feel unworthy of entering a relationship or something like that. If people knew, it was like “I really don’t want to deal with those needles and things and what if he has a hypo and I just don’t want to know about it. I’ll find somebody who is healthy.” And that’s how I felt. I kept it a secret for years until I thought well, this isn’t really safe. And my friends do have to know. So I started wearing the bracelet and now I’m quite open about it. I’m not ashamed to be diabetic anymore, but I’ll tell you, I was for a very long time.

Banks Peninsula

If you could improve anything about the medical treatment you receive now, what would it be?

I would like the New Zealand government to fund new technologies. I’ve heard that insulin inhalers are being developed or the patch that continuously reads your sugar levels.  If these devices are successful in other countries, it will be at least ten years before they’re introduced in New Zealand.

Are you comfortable traveling with diabetes?

Yes. When I went scuba diving, for example, I had to get a medical certificate to say that I could go. The diabetes thing came up and the doctor actually changed my medication – this is before I was on insulin – to a certain type that was known to be generally impossible to go on a low. He put me on Metformin, which apparently can’t really send you on a low, and so it was safer to go scuba diving.

If I was back in Russia, using insulin, I wouldn’t be very comfortable at all. When I was there, nothing was funded. I just had good private insurance. People were still using glass bottles with hypodermic needles.

In Greece, I thought it would be primitive and troublesome, but it wasn’t. It was amazing. When I had my problems there, they had everything.

I have to get a more expensive policy for diabetes, but they do cover it. I had to specify that I was MODY-3. I did have that incident in Greece that was about 1,400 euros, but my insurance paid for that.  And this was not a specialized insurance company. This was just a regular policy through my bank and it was just offered to me just across the counter. I just had to tick a box and I was covered. I thought that was available everywhere, but I guess that’s what the blog is about, isn’t it?

We are so grateful to the universe for finding Brendon in our backyard and for his eagerness to share his journey with MODY-3 diabetes. Then, after the long and fruitful conversation about diabetes care that the three of us shared, we stupidly forgot our Medactiv ice packs for Damián’s insulin bag in the freezer at our Christchurch house, making us look like a bunch of irresponsible amateurs. However, these things do happen – even to the most careful micromanagers! Luckily, Brendon went the extra mile to send us our ice packs in the mail to our next address.  It was just another kind reminder that no matter where you are, there is always someone willing to look out for you. You just have to ask.

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