Steph's story: my experience living with rare MODY diabetes

• Was diagnosed with Maturity onset diabetes in the young (MODY) aged 12
• Suffered from diabetes burnout in her teens. 
• The turning point came after she was hospitalised with diabetic ketoacidosis and was switched to insulin therapy, which has given her greater control over her blood sugars.
   

Family history

My mum has had diabetes since she was seven. Her mum had it too, as did my great-grandmother. Of my mum’s three daughters, myself and another of my sisters has diabetes. That’s because we all have a rare type called Maturity onset diabetes in the young (MODY), which we have inherited from a faulty gene. It’s very rare compared with type 1 and type 2 diabetes – experts estimate that only 1% to 2% of people with diabetes in the UK have it.

My mum made sure I got a diagnosis, because of our strong family history. A genetic test confirmed that I did indeed have MODY and not another type of diabetes. With MODY, you are generally diagnosed when you’re quite young. Typically, when you’re diagnosed with diabetes at a young age, you have type 1 diabetes and are insulin dependent. MODY means your treatment normally involves diet and tablets, but it’s not like type 2 where you can put it into remission by changing your diet and losing weight. MODY is genetic and if you have the genes for it, there’s not much you can do to stop yourself from developing diabetes.

Physically, I was very thirsty and tired at the time I was diagnosed. In terms of my emotions, I didn’t really think about the impact diabetes would have on my life. When I was discharged from hospital, I was told I’d have to take tablets and watch my diet and everything. For a good few years, I really struggled with diabetes.

I didn’t want to be different. So, for a long time I didn’t really look after myself as well as I should have done. I got so frustrated with the situation. I was trying to monitor my blood sugar levels and it just wasn’t working. It got to the point where, even on my best day on tablets, even if I ate really well, I couldn’t get my levels in range. I started skipping appointments and I did stop taking my medication, which at the time was tablets.

I just ignored my diabetes and my mistake was that I was very ignorant. I thought, ‘well, I’m fine, it clearly doesn’t make that much difference.’ Now I know that it will hit you later on.

Family support

I’m at a stage now where I’ve got a little girl and another one on the way. There are times when managing my diabetes can be difficult, because I’m still producing a little bit of insulin and also taking insulin, so I can have hypos and that can be tricky. However, these days I don’t generally find having diabetes too bad.

It does concern me a bit that my kids could get diabetes. Of course you want your kids to be healthy, but ultimately, it doesn’t make too much difference to me whether my daughters develop diabetes. They have loads of family around who also have it and know what to look for. As far as having lots of support is concerned, the genetic element is helpful.

My family have been very supportive of me over the years. They’ve probably wanted to kill me at times when I haven’t listened or looked after my diabetes properly! I couldn’t have managed without the support of my family. They’ve had to bear with me at times when I was being very difficult. 

About four years ago, I got sick with a bug. Because I hadn’t been looking after myself, I got really ill and developed diabetic ketoacidosis. I was in intensive care for a week. When I was a bit better, the consultant came to see me and asked what I thought we needed to do. I think it was the first time someone had actually asked me what I thought. I said, ‘I’m trying and I can’t do it on tablets. It’s really frustrating. You get to the point where you feel like there isn’t a point.’

I think doctors I’d previously spoken to had been reluctant to put me on insulin, but that doctor said we could try it. From the minute I’ve been on insulin, my control has been much better. My mum and sister are still on tablets and it seems to work well for them, but it doesn’t for me anymore. It’s a bit of a strange one. Even though I’m MODY and I do still produce a little bit of insulin myself, insulin injections seem to work better for me as a treatment plan. 

Now that I’m well managed, I’m a lot calmer about my diabetes. I have a good sense of perspective. Before, I’d have one bad day of blood sugars and think, ‘oh, I can’t do this!’ Now, I think, ‘well it’s a bad day,’ and I try to keep calm. I have a really good team around me at the moment who are very supportive.

My biggest challenge has been getting my head around the fact that diabetes can actually be really manageable. You can live with it and you can do anything anyone else can. Obviously there are certain considerations that you have to have.

You can’t be ridiculous about what you eat and you’ve got to monitor your blood sugars, but there’s no reason you can’t do things. I did a skydive a few years ago for Diabetes UK and I loved it.
 

My experience with Diabetes UK

I like using Diabetes UK’s online forums for advice. The website is informative and it’s good to have a read through. As an online resource, it’s really interesting and useful.