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Interview 32

Age at interview: 27
Age at diagnosis: 7
Brief Outline: Since diagnosis and until she was sixteen years old she was on a two daily injections of insulin. Until her early teens she had well-control diabetes, but then it began to slip. She found her insulin regimen oppressive and limiting so when it was changed to short-acting and long-acting analogue insulin she had a sense of freedom that she has never experienced before in relation to food and mealtimes. The problem was that around the same time she started to be concerned about her weight and decided to go on a diet. That was the start of her eating disorder that was to last for several years. She realised that she needed help and talked to her GP whom she trusted. Eventually she was able to find a psychologist that worked with her and helped her overcome her eating disorder. Unfortunately she developed diabetes-related complications which affected her eyesight. She was registered blind at the age of 23. She currently uses an insulin pump and her control is very good.
Background: Performing artist. Shares a house with a friend. Her advice to other young people who are not doing their insulin injections is to find the courage and to seek help as soon as possible.

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Because she knew and trusted her GP they worked together to help sort out her eating disorder.

Because she knew and trusted her GP they worked together to help sort out her eating disorder.

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I've been with my GP since I was a child and they knew me. It's a friendly little practice and I felt quite comfortable going in there. 

And I'd put it off quite a bit. I'd make an appointment and then cancel it. But eventually I did, did get there. And when I went in through the door and I sat, I was sitting in the room with them it was a lot easier. I was able to say to them, you know, what, what was wrong.

Do you remember what they said to you, he or she said to you? And when you explained what you were doing?

She said to me, 'What would you like us to do, [name]? We'll do anything that we can to help, you know. What would you like me to do? Would you like me to refer you to somebody who you can talk to who will know about the situation that you're in?' I remember sort of not saying, 'Yes' straight away. It was like, you know, kind of, 'I don't know. Do you think I should?' And she gently persua-, because it's a really hard thing to do, you know. It's very hard to sit there and say, 'Yes, I need help'. And, because it's admitting that you've got a problem. Which takes a long time to do. But eventually I did say, 'I think I should do. Yes, I think maybe I should. Because I don't want to carry on like this. It's, and I'm in pain all the time, you know. I need to pull myself out really.'

Do you think that that approach is one that works with young people?

Definitely. A hundred and fifty per cent. Because for a start when you're a teenager you, if somebody tells you to do something you don't do it. You know, it's like, 'No, I'm not doing that. She told me to do it'. But if you gently persuade that person that it's maybe a good thing, you know, or let them think it's their idea, that type of attitude, you know, then you do it. But with something as delicate as an eating disorder, anything that, anything that would make you think that you have to eat again is very very frightening. And by admitting it and by telling somebody, and then somebody telling you what to do, it's quite frankly, just, it would have petrified me or perhaps, you know, it would probably have put me off. But her approach was that it's me and my situation and I have to decide what I really want to do. Because you can't sort of force somebody to do it when they're not ready because, you know, they won't deal with it with their heart and their soul. They'll be going through the motions but then they'll just lapse back again. So her approach was perfect. But it was, and I think probably she knew me, because she knew me as well. She'd known me for years and years and years. She knew everything that I'd been, she knew my history, you know. If I hadn't have agreed to go then, then I would have probably come away and still felt amazing. Because I did feel amazing, because I'd finally told somebody about it who might be able to help me. I would have probably come away and then gone back again in my own time. But had she have said, 'Right, okay, you need to see someone. We'll refer you' it would have absolutely petrified me I think. So she did, she did leave it to me to do in my own time.
 
 

Feels she needed more supervision from her clinic when she became a teenager and her life changed...

Feels she needed more supervision from her clinic when she became a teenager and her life changed...

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When I was moved on to a more flexible regime, I was on, previously I'd been on two injections of long-term and short-term acting insulin mixed together, the Mixtard. Which, you did your injection, it lasted over so long. But obviously when your sugars dropped at, at different times of the day, when your hormones were what they were, that's when you had to eat and that's why you had to have, you know, set meals. But the insulin regime I went on was, it was ActRapid, which was a short-term insulin. I was also on a long-term background insulin, which I can't remember the name of, because I got terrible memory. 

But basically it was a background insulin which stayed in the body throughout the day. And then when you wanted to eat something you did a booster injection. So you did a fast-acting injection before you ate, to allow you to eat. And that's why you could more or less eat when you wanted. Because you just had the background insulin, you had insulin on board all the time, which kept your sugars level. And then when you wanted to eat you just boost your su-, you inject the insulin into you to lower your sugar levels so that you could eat. So you could eat when you were hungry basically, and eat as little or as much as you wanted within certain, you had to be very well controlled to be able to do that. And so obviously had to be very well controlled in the first place to be able to that and know what you were doing with your insulin. Which I was, because I'd been very well controlled all my life. 

So that, that was more or less it. And obviously when, when I started to have my eating disorder I was missing injections. Like I'd miss my breakfast. So I wouldn't do my breakfast ActRapid. But my sugar was still all right because I had the background insulin. Or I'd miss my lunch. And my sugars would still be all right because I had the background insulin. If I wanted to eat a lot more, I'd just inject a lot more ActRapid for the carbohydrate. And that's how it worked. And I guess because I was on such a strict regime before, there was no question, I just did it. Whereas with this, it just gave me a, it just gave me a lic-, a, you know, a licence of freedom that I'd never had before. Which I started to abuse. Because I'd never had it before it was like a whole new experience. And it's letting, it's like letting a child loose in a sweet shop, you know. It's like all these new wonderful ways that I could experience. And I could eat late and I could go out for meals and not worry. And it was just fantastic. So obviously I ended up abusing it, you know.

How old were you?

I was 14 when I was put on that new regime.

With hindsight, what would you have needed? What do you think they should have given you? More information?

With hindsight, I should have had a lot more information about the insulin. I should have had a lot, I should have had a lot more of a watch on me. Because in actual fact I was good, and I did, when it came to my diabetes appointments or diabetes check-ups I was, I was always very good. And they should have really monitored me a lot more closely, and asked me how I was getting on with it, and maybe talked about certain situations that I might be in as a teenager. Because being a teenager is just, it's like, it's a, a whole alien concept. It's like a whole different life that you need to learn about. And there's nothing in the middle. There's, it's kind of, there's a lot of things there for adults and whatever and you get spoken to like an adult and things and you get spoken when you are a child and told what to do but' 

You were talking about teenagers?

 

Every time she was on stage her sugar level would go very high. Her diabetes team helped her to...

Every time she was on stage her sugar level would go very high. Her diabetes team helped her to...

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I was on the four, four, well, yes, four to six injections a day regime with the Lantus and the NovoRapid. It was a very good system. I was, my HbA1c was 5.9. But I still had the hormone changes. I had very very fluctuating hormone levels, you know. And the insulin can't, no matter how hard you try sometimes and how, whatever you do, the insulin can't compensate for it. And because I was doing more performing, more singing and trying to get me sort of involved in more theatre, I was noticing that adrenalin in my body was shooting my sugars up through the roof. And when I was coming off stage my sugar would be through the roof. So I thought, 'Oh, well, this is just fantastic, you know. I'm living my dream but in the long term I'm going to make myself even more blind because the adrenalin level is going to get me'. 

So I spoke to the staff at my diabetes clinic, which are absolutely amazing, and they knew everything about me. And I talked to them in detail about it. And, you know, I says, 'What can I do? I can't, I've got this far, hell, I'm not giving up my dream now'. My mum, still tried to dissuade me. But, and they says, 'Well, we can try and get you on an insulin pump'. But they are not, unfortunately they're not available on the NHS at the moment. And they can, my particular clinic can only, can only sort of put so many people a year on them through the Primary Care Trust. And they basically, they basically said, 'Because you've lost so much vision at the age of 23, you're so young, and you want to maintain that vision for the rest of your life, and your job affects your, your blood sugars, we'll try and get you the funding for an insulin pump'. And they, they did. It came through. And that's been a, quite a tough ride, getting, getting it all balanced out. But it's amazing. And the first time that I did, I did a gig on stage and I sung, and I came off the stage and my sugar was 5.9. I was like, 'Yes'. Because the insulin pump had worked. I was so pleased. So that, that's how that came about.

 

After years of having high blood glucose levels she developed diabetes-related complications that...

After years of having high blood glucose levels she developed diabetes-related complications that...

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Obviously two years on, when I'd brought my sugars under control and they were running normally for the first time in, well, five years, something like that. Drastic, apparently drastic changes to your body and the way you operate your body do have an effect. And I ended up going blind. I ended up losing my sight. 

And what happened with that was, it was a few years after I'd brought everything under control. I was on holiday with my friend in Greece, visiting another friend for her birthday. And when you go abroad, your sugars are a bit up and down, all over the place, because of the heat and the different food and things like that. And I noticed that my vision was getting slightly, it was slightly blurred. And I thought, 'Well, okay, this is fine. It's just because my sugars are a bit haywire it's a bit blurred'. I wore glasses anyway, for driving and reading. And then after about a week I really started to worry. Because in actual fact I'd only been to the optician about two weeks before I came back, before I went on holiday. And she'd checked the backs of my eyes and everything. I didn't need a new prescription. So after a week I was slightly concerned. I remember coming down from my room one day to find my friend by the pool. And I couldn't actually pick her out. I couldn't pick her out because it was all so fuzzy. And I think that day I was really really frightened. But I put it to the back of my mind till the holiday had finished. I just tried to be very rigid with my sugars. Which was quite difficult, but, you know, you have to do. 

So I got home and I went straight back to the optician. And when she looked in the back of my eye she started to see little tiny blood vessels growing in the backs of my eye. And she said, 'Don't worry because it happens with every diabetic. Every diabetic who's had diabetes this number of years will get these blood vessels. It will just have to be lasered and then it will be fine'. So I went to the diabetic clinic for them to have a check. And they said, 'Oh, it's fine. It's nothing to worry about. You'll be fine'. But two months on I went back for another diabetic check and basically my eyes had just exploded with blood vessels. And the doctor was quite concerned at how quickly that had happened. So I had the various pictures taken of the backs of my eyes. And they started lasering blood vessels in the back, in the back of my eyes, trying to seal them, because they leaked out blood, which is what causes you to go blind. But as quick as they were lasering them, the blood vessels were just growing and growing and growing. Eventually I lost the vision in my left eye. That was after a couple of months. And they'd said my right eye was going to be fine. 'Don't worry. We'll be able to save your right eye'. They started lasering that. And within a week I had a haemorrhage, which caused me to lose all vision in it.

So I was sort of registered, registered blind, which was at the age of 23.
 
 

In her teens she felt different and depress and started to eat things she wouldn't normally eat...

In her teens she felt different and depress and started to eat things she wouldn't normally eat...

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I do remember feeling quite different at things like parties, children's parties, and when people were allowed to have cake and sweets and things like that. I didn't realise how much of an impact that actually had until I hit my teens. So up until probably 12 or 13 I was, was very well controlled. My HbA1c levels were, were great. It was a struggle. It wasn't easy as a child, but it helped with my sugars being normal. Obviously when you're all over the place you just feel horrible and poorly. 

When I hit my teens and I went to high school I started to feel really quite different. I actually wanted to know if there was any other types of insulin that I could go on that could make me have a bit more of a relaxed lifestyle, because I was still on a very rigid regime. So I had to eat at certain times, eat certain meals. I wasn't allowed certain things. And by that time I think it was starting to wear on me the fact that, you know, I wasn't allowed to just eat sweet things and pizza and things like that, you know, that all the other kids were having. I also had dreams of becoming a performing artist. And eventually I, in hindsight I know that I became depressed, feeling like this. And my control started to slip because of teenage pressures and I was starting to go out and, you know, 'Oh, I'll be okay just having this sweet and this chocolate bar. And I'll be all right just missing this injection just this once'. And my control started to slide. 

Going through adolescence, obviously you do, you do different things. You start going out more, mixing with different types of people. I didn't really talk about my diabetes a lot to other people. So they weren't really fully aware of the situation that I was in and what I needed to be like. They just thought it meant that I didn't have to eat sugar, or maybe my sugar went low now and again and I had to eat a Mars bar. I didn't really tell people around me. Which I probably should have done. I should, probably should have made people more aware. But I didn't. 
 
 

Describes how restrictive her insulin routine was and how it became a problem when she reached...

Describes how restrictive her insulin routine was and how it became a problem when she reached...

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The insulin regime I had when I was younger was more or less two injections a day at certain times. As an example I'd have to have my breakfast at 8 in the morning and I'd have to have my lunch at 1 in the afternoon, have my tea at 5 o'clock, have my snack at half 10, have a snack at half 3, have a snack at half 9 before I went to bed. And that's pretty much what my life consisted of. Obviously no sugary foods. Low-fat, low-calorie, long-term carbohydrates, very healthy things. Which was very very restricting, especially as a child. Luckily my mum had brought us up with a healthy diet anyway. So it wasn't too much of an adjustment. And I was allowed the odd chocolate bar and things if I did a hundred skips. You know, if I did a hundred skips and bring, brought my sugar level down, I was allowed a chocolate bar. So there was ways around it. But there was one particular time when I, the class went swimming, and obviously for exercise you had to boost your sugar levels up. And my teacher couldn't open my sugar box. It was stuck. So I wasn't allowed to go swimming. And I absolutely loved swimming. So I had to sit out on the side of the pool and watch all my friends playing in the pool. Which, it really did devastate me. And obviously I remember that incident because it hit me so much. So that's an example of what I had to do. And another thing that I had to do, which was adjusting my diet. You know, you couldn't just jump in the swimming pool and go swimming. You had to have sugar before you went.

It's probably, definitely the age of, of say 12 or 13, when I was in middle school, getting slightly older, becoming more aware of my figure. And then moving on to high school. And I hadn't really thought about it very much until that point. But obviously when you go to high school and you're going through adolescence, your body's starting to change and develop. You become very aware of it. Especially when there's girls looking at gorgeous pictures of women and saying, 'I want to be like them'. And, and boys are doing the same thing and they're checking you out and criticising people. And like kids do to each other, like teenagers do to each other. But obviously for me there was nothing I could do when girls around me were not eating a lot because they wanted to be thin or slim. I had to eat. And they'd sit and pick at things and I'd have to eat the full meal. With hindsight, this, I think this is, this is probably what caused my develop, eating disorder to develop. Because my life had been so focused around food it was the only thing that I could control. I became depressed because my sugar levels were starting to slip.

Then I actually spoke to my diabetes nurse and I asked her, I said, 'Is there a different insulin regime that I can go on that, that can help me with my new lifestyle as a teenager? With, basically not, so I don't have to eat at set times. So I can go out and eat later on if I want. So if I don't want to eat as much lunch, I don't have to eat as much lunch. I can eat a little bit'. She put me on a new insulin regime that allowed me to be a lot freer with my food and the times of food. And for the first time in years I discovered that I didn't have to have snacks. I could actually reduce the amount of food that I ate. I could eat, as long as I knew the carbohydrates and things, I could more or less eat what I wanted. And I guess it, in an ironic way it was a new sense of freedom. But also it's quite a dangerous thing. 

Because I was becoming so self-aware, I was able to use that to control what went into my mouth. I decided to go on a diet and lose weight.

And it just spiralled. And I almost went anorexic. But with an eating disorder it can go one way or the other. You can, you can end up wasting awa

 

Describes how her binge-starve and not doing insulin injections started and how she felt...

Describes how her binge-starve and not doing insulin injections started and how she felt...

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Sometimes, you see as a diabetic, [cough] although I was controlling what I ate, [cough] you can't always control your blood sugars. Obviously if I have a, if I have a hypo, a hypoglycaemic attack I have to eat sugar, otherwise I die, you know, simple as. When you have an eating disorder, you have a hypoglycaemic, glycaemic attack and you have to eat something sweet and sugary, it's disastrous, because you don't want to eat it, because you think it's going to make you fat. And in actual fact this is what spiralled my first binge off. I had a hypo. I ate some fudge that was, because I had nothing else at hand. And then that was it. I just wanted to eat and eat and eat and eat and eat. And I couldn't stop. And like any bulimic knows, once you've done that you feel terribly guilty. But I actually have a really bad phobia of vomiting. That, it's something that I could never ever ever do. I just didn't know how to get rid of this binge. So I exercised and, and I starved myself for the week after. Hence the cycle, which started off with the starve-binge, starve-binge. 

About a year or so after that, funnily enough, ironically enough it was a diabetes nurse who put the idea into my head. It had got to the point where I was so ill that everybody around me was worrying. You know, I'd lost a lot of weight, I was thin, I was not concentrating on anything, I looked very very ill. 

I wasn't realising the damage I was doing to my body. It's not something that was at the forefront of my mind. It was the fact that I was fat. I needed to be thin. Especially to be a singer and to be an actor, I had to be thin. And that's the only way I was going to make it. So as soon as she said that, this kind of light went on in my head and I thought, 'Why didn't I think of that? I'm a diabetic'. That's when the starve-binge and not injecting myself regime started. 

And when you don't inject for the binge, if you don't inject for a few days after, you can actually, I mean I've lost sort of over half a stone in a few days doing what I used to do. I lost weight again. And it got to the point where I wasn't doing my injections about three or four days and my sugar was so so high. I remember being, and by this time I was, I'd left school and I was in work. I left school at 16 with a view to working and then going to drama school when I was a bit more sorted out. Because you can't learn lines and you can't sing when your sugars are so high and you're so dehydrated all the time. And mentally you can't focus on anything.

I actually remember being in my workplace and being in the toilet. I remember sitting at my desk, thinking, 'I have to go to the toilet because I'm going to keel over and I'm going to go in a coma'. And I went into the toilet. And I actually sat in the toilet and I just, I was looking at the floor thinking, 'I can fall on the floor now and go into a coma. But if I do that I might not ever wake up again. I can't do it'. So, I don't know how, mentally I managed not to collapse. I got home and I did an injection. And it was a really really hard thing to do. Because in the back of my mind was, 'If I do this injection I'm going to be so fat'. But also in the back of my mind it's, 'I have to do this injection. I'm going to die if I don't do this injection'. My sugars weren't even registering on the, in fact at that time I was using BM sticks with a, matching up with a colour chart. The sugar was just, it there wasn't a colour on the chart for what my sugar was. It was so high. It had gone off the scale. And I think that was the point when, when I said to myself, 'Right, I need, I need help. Because it's got to the point now where I will probably die. If I, if I go in a coma and I don't inject myself with insulin, I'll probably die'. I was
 

She explains that her therapy consisted of taking small steps at a time. Says that when she lost...

She explains that her therapy consisted of taking small steps at a time. Says that when she lost...

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What did the psychologist teach you?

Every individual is different. So for every individual it would be a different thing they need to focus on when they have that negative thought. And you start with very small steps. Like one of my, one of the things I started to do was, instead of thinking, to think that I'm not going to binge, that's too big a step. Because if you've got the thought where binge, you're going to binge, there's no way you can't if you've got an eating disorder until you, you've come through on the other side and can fight it and when you are strong enough. So one of the small steps that I took was that I'd binge on healthy food. I tried to binge on foods that weren't as sugary, because I'm a diabetic. So that would make me feel, it would make my sugars less high. Which would make me feel a tiny bit, a tiny bit better than had I have binged on all of the things that I used to do. So that was like a small step that I did. When I was further down the road'

I remember one time, a specific time, and was quite a long way through my treatment actually. And I remember having binged. And I was starting to do my injections again and I was on a roll and I was starting to feel a lot healthier. And I remember bingeing. And I'd done, I'd done my night-time, I'd done my background insulin the day before. I'd done all my insulin up to that point of the binge. And I remember thinking, 'Oh, my God, this is, I'm going to put so much weight on, because I've got my background insulin'. Because obviously what I used to do was not even do my background insulins, so I'd have no insulin on board at all. But I had all my insulin in my body and I ended up having quite a bad binge and I really really wanted to inject myself. I drew the syringe up and I wanted to inject myself. And I was sitting on the bedroom floor crying for a long time, thinking, 'Just do it, [name]. Stick it in you. Go on'. But there was a, another voice in my head saying, 'Oh, God, you're going to put, you're going to put so much weight on if you do this jab. You're going to be really fat tomorrow'. And then the other voice was saying, '[Name], you're going to be unwell tomorrow. Please do your injection'. And it was this internal battle going on in my head. 

So one friend who I'd talked to quite closely about it, because I couldn't keep it from every single person. I had to have one person that I spoke to. So I confided in a very, very close friend. Which took a lot of years. But she knew what was going on with me and I'd talked to her about like the psychologist and things. And she said to me that, 'If you ever ever need to phone me up, please phone me up, please phone me up and I'll talk to you. If you get the urge to binge, please phone me up'. And this was one of the things in actual fact that the psychologist and I had discussed, whether there was anybody that I could do that with. That if I did have these urges, could I phone somebody up and speak to them and try and change my way of thinking about the binge? 

So I phoned her up and I was on the phone to her for an hour, just crying. And she said, 'Please, do your injection. I want to stay on the phone while you do it'. And I did the injection. And it was, it was a real hurdle for me to do it. Obviously the rest of the week was a bit skew-whiff. You know, I ended up not eating very much for the rest of the week. But the good side of it was at least I did my injection for that binge. Which was a very very very big step, you know. 

So it was, it was things like that that, that, you know, that really helped that we talked about, that I could maybe do in that situation. Which is what I did. And it was very hard. But you, you feel like you've come this fa
 

She had to ask her diabetes nurse for practical advice about drinking.

She had to ask her diabetes nurse for practical advice about drinking.

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But through my teenage years it was very much a case of just the politics of it, the mechanics of it. 'We'll check your HbA1c, we'll check your sugar levels, we'll adjust your insulin and then you're on own'. And I don't ever ever remember having one conversation about the kind of problems that I encountered. Maybe one about alcohol, which is what I asked about, you know, 'What, what am I allowed to drink? What happens if you drink?' And then somebody basically just said to me, 'Just make sure you, you, make sure you eat when you come in'. I think that was the advice I got, 'Make sure you eat something after you've drunk, because it, alcohol lowers your sugar level'. It was myself that, trial and error. Which is quite a dangerous thing to do. Which it was a dangerous thing to do, because I didn't know what I was allowed to drink and what I wasn't. And everybody else was doing it, so, 'Why shouldn't I?' Now I know that I can drink dry white wine and very low sugar things. Back then I was drin-, you know, doing the same as everyone else did. Just drinking alcopops and sugary this and sugary that and didn't have the first clue. But, you know, I sort of had to do it all myself by, by trial and error and testing my sugars after certain things. When I was, when I cared more about my diabetes as I grew older, that's more or less what I had to do myself.
 
 

Work with diabetes rather than against it because it is generally those people that do not...

Work with diabetes rather than against it because it is generally those people that do not...

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Based on your experience, what would be your advice to other young people with diabetes type 1?

Based on my experience, I think you, the first thing you have to do is admit you're a diabetic. You have to accept that you're a diabetic and that you do have to live your life slightly differently. But it doesn't mean to say you can't live your life. You have to work with diabetes rather than against it. Because if you work against it, it will work against you. And I think also if, if you aren't doing injections and you do know that it's wrong what you're doing, you need to try and find the courage to seek help as soon as you can. Because you won't get away with it, unless you're very very lucky. Which, I've not met, I've not met a bad diabetic who has been lucky. 

There's, I've met bad, shouldn't say 'bad' diabetic, but the diabetics that I've met that don't really control their sugars very well generally have the problems. Whether they're minor or not, you know, whether it's a bit of kidney damage or they've got nerve problems in their feet. Maybe not as severe as mine, but generally speaking the diabetics who don't control their sugars get the complications. And you don't have to. It's a case of finding the right clinic for you and the right people around you, getting the help that you need.

 

Learn to know about us and our problems. We are all individuals who have particular needs.

Learn to know about us and our problems. We are all individuals who have particular needs.

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My advice to doctors and nurses who deal with young people with diabetes is get to know the diabetic, try and help and encourage them, and getting them into a, an insulin regime that will suit their lifestyle, get them to talk about what they do in their life, what insulin regime is good for them, and a chance for them to talk to you, you know. That's all it is. They just need somebody to talk to who can understand what they're going through. And have somebody there who can support and try and advise them and, and show them the, show them the right directions. And I think that's, that's all it takes really. A diabetic is not a number. A diabetic is an individual who has individual needs. And that would be a great great help I truly believe.

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