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Ruby's story: my experience taking part in an immunotherapy trial

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Ruby Wain

Diagnosed in 2017.

Taking part was really beneficial for me, especially being newly diagnosed. The extra support in that first year was invaluable.

When Ruby was diagnosed with type 1 diabetes, she was shocked and overwhelmed. She was then offered the chance to take part in a clinical trial to test a new type of treatment called immunotherapy. Ruby found the extra support in her first year of diagnosis invaluable.

Diagnosis

Juggling the circus and a type 1 diagnosis

I was out in Gran Canaria performing in a circus show when I was diagnosed with Type 1 diabetes. I was doing lots of things that were out of character for me, like drinking loads and loads of fizzy drinks.

It was a slow and then rapid decline, and then one night I remember being on stage and it felt like I had cement blocks on my feet. I just couldn’t find the energy to move.

I went to the GP the next day thinking she was going to tell me I’m exhausted and need to take time off. But she did a few tests and said we think you’ve got diabetes. I thought I’d maybe get given some tablets and would have to see the doctor again when I was back in the UK. But instead they put me in an ambulance and sent me to hospital for six days.

I decided not to finish the last three weeks of the contract and instead chose to focus on my health – I came home and went back to Wiltshire, where my family are from.

Life with diabetes

Finding a new balance

At the very start I was terrified about getting back into performing. Things that I’d done before I was suddenly worried about because I didn’t feel in control of my body.

But I got over that fairly quickly and now, it has made me more fearless. I think ‘what’s the worst that can happen’ and I just go for it.

 

Ruby's perspective

Diabetes is definitely something else to think about, something else to bring with you, something else to control when already you’re dealing with the performing. I have to think even more about food and how my blood’s going to play out. The last thing you want when you’re half way up a rope is to go low and think ‘ah I could really do with some jelly babies right now’.

So yes, sometimes diabetes gets in the way and there’s extra thought that goes into everything for sure. But I’ve learnt patience is important and it’s given me an extra amount of confidence in myself. You own things a bit more.

Treatments

Taking part in a clinical trial

When I was back in the UK – and had eventually managed to fight for an appointment with a diabetes specialist doctor – he told me about a trial that was looking for people who’d been diagnosed in the last 100 days. I got sent an information pack about the study. It was really simple to follow and explained what the research was looking at and the drug they were using.

Ruby took part in a trial that was testing a new type of treatment – called immunotherapy. Immunotherapies work by retraining the immune system, and scientists hope they could stop or slow the immune attack behind Type 1 diabetes in people who’ve just been diagnosed.

I understood that it was going to try to prolong the honeymoon period and how it would hopefully work by stopping the destruction of the insulin-producing cells that I still had. And the doctor explained why that would be beneficial. It could make blood sugar control easier and he said that having good control right at the beginning could really help down the line, it might help protect me against complications.

And I thought, sure why not. It wasn’t going to make it worse, but it could really help.

Over a year I had about five visits to the clinic where they did different kinds of blood tests and health checks. I also had what was called a mixed-meal tolerance test a couple of times, where they gave me a milkshake to drink and then took blood at different intervals over two hours.

At each visit I was given the next batch of the drug, which was just an injection once a week. So I took my Lantus in the morning and then once a week I’d also take that at the same time. It didn’t affect my routine at all, it was just another injection.

 

Extra support and the chance for a good start

Obviously you’ve got lots of change and lots of new things to learn, but I didn’t have another appointment with my diabetes clinic due for almost a year. So it was nice to have those regular meetings as part of the trial. If I had any problems or questions I could get advice from a healthcare professional, rather than searching on the internet. I didn’t feel quite so out there by myself.

It’s nice to be in the know and be at the start of something. If the drug I was given does come out onto the market in however many years’ time, it’s nice to have been at the beginning of that. And to have had a chance of making this really rubbish condition a bit better in the long run.

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