Signing up for a diabetic research study saved my life says Steven Emmerson from Hadleigh
Steven was diagnosed with type 1 diabetes back in 1965 where he experienced a lot of shame and isolation around the condition.
Last updated 14th Oct 2022
"For the first time in 45 years, I had a degree of control," says a Suffolk man who took part in a clinical trial. He says it saved his life.
Steven Emmerson from Hadleigh was 6 years old when he was diagnosed with type 1 diabetes back in 1965, where he experienced a lot of shame and isolation around the condition.
Because of this Steve admits he didn't manage his condition that well. He told us some of the impacts from this.
"I've lost quite a bit of my eyesight. I have no feeling in my feet apart from pain, which sounds contrary, but I can't easily feel the ground.
"But I can feel pain because the nerves have died and this is one of the long-term complications have being diabetic and not managing it particularly well.
"Blood vessels get damaged by high blood glucose and glucose. And doesn't make you feel very great at all...And over time that results in quite serious complications and internal organs and the rest of it. So type one is a really nasty, nasty disease.
"It's come a long, long way in terms of treatment since I was diagnosed.
"What we have to remember is that any diabetic diabetes doesn't just affect the diabetic, it affects those people around you just as much. So the lifestyle for my whole family changed ."
Steve told us about the clinical trial that saved his life.
At the time he had been living with diabetes for 45 years. The trial was for the Diabetes Research team at Ipswich Hospital.
The study included a device for people with type 1 diabetes called FreeStyle Libre.
It is attached to the upper arm and a mobile phone can be used to scan it and check glucose levels. Allowing real-time results.
"I was offered the chance to trial what was called a Libra. And I thought, ohh, what? What is this gonna do? And they showed it to me, and it's a little white disk and it goes on your arm and it tells you what your glucose is.
"And I said, well and, yeah, but I've pricked my fingers. So what's the point?
"(They told me) You don't have to prick your fingers anymore. It will tell you what it is. You just flash a little. It's a little bit like a mobile phone. You flash it somewhere near that Libra and it will tell you exactly what's going on there.
"And then I can remember going home on the bus and constantly doing it. People must have thought what the hell is he doing? But I thought this was absolutely incredible.
"And it was also an element of I can't quite believe this.
"But it was also freedom. It was a sense of freedom from that really strict way of having to behave.
"I could, if I wanted to, sit here and keep doing this (scanning the Libre)s every few seconds because it takes a reading every minute, so I could literally do that every minute if I wanted to, and that would give me such a picture of what's going on."
Before the device, Steve would prick his finger to check his levels. He told us he had experienced judgement for doing this and felt freakish, which affected his mental health in a negative way.
"Over 40 years, amounts are quite a 10s of thousands (of finger pricks). So you have fingers like elephant skin.
"And it's not nice and it's not something you like to do.
"If I was in a meeting at work, I wasn't gonna prick my finger.
"There were occasions when I thought, I know I haven't eaten. I have to do it and I'd try and do it under the desk.
"And there was one lady who was horrified that I would be doing that in a public place and 'don't I know better.'
"And you know, I'm thinking I'm doing this for my health. I have to do it. But, I didn't.
"I felt embarrassed and I felt small and I felt stigmatized, and I felt vulnerable, and I felt different."
Steven told us, after receiving the Libre device it was the first time he felt a sense of control in 4 decades.
"And I would have been in my 50s at that age, so I would have had diabetes 45 years perhaps for the first time in 45 years, I felt like ID degree of control.
"Also (this was) which was important to me, perhaps less so to other people. It was quite discreet because you could wave it, (and) you could wear it under clothing. Nobody would see it.
"It gave me the ability to manage my diabetes to the extent that I probably wouldn't be here today if it wasn't for that.
"That was the precursor to other technology that came along later.
"But the Libre has got a special place in my heart because I feel I was part of it. I was part of testing it. Part of making it in a tiny, tiny way, making it as good as it as it is now."
Steven is incredibly grateful to have been apart of the clinical trial.
"I felt a sense of pride as well that I'd helped in some tiny way, and huge gratitude to the research department Doctor Sharma.
"He is actually the guy who saved my life because. Yes, clinicians do save lives, but I just wonder sometimes. Do they understand what that means? Do they fully appreciate what that means because it's their job, day in, day out?
" But for me, it's given me all these extra years of having to put up with boys moaning and groaning and you know my sons, but that's great.
"That's life and suddenly the sense that I'm no longer quite so freakish."