Charlie's story: living with a rare form of autoimmune diabetes

Charlie explains about living with a rarer form of diabetes known as Latent Autoimmune Diabetes in Adults. 

• Diagnosed with diabetes aged 34 but didn’t know what type of diabetes he had or that there were different types
• Was then diagnosed with a rarer form of diabetes known as LADA years later 
• Manages his diabetes with insulin and a blood sugar meter 
• He now fundraises and volunteers for Diabetes UK and raised £3,500 last year

For several years my mum had nagged me to ‘get myself tested’ and I resisted vehemently until the day when I finally relented in November 1979 – a pivotal moment I will never forget.

A simple urine test, that was repeated and followed with a blood test proved conclusively that I had diabetes. I’ll be honest with you, it leaves you dumb struck and heart-broken; I felt a total loser – a slim guy, who seemed perfectly healthy on the outside yet nibbling away was this ‘silent’ illness where my pancreas just wasn’t up to the task.

My GP told me I had diabetes and I didn’t even know there were different types at the time, I just knew I had diabetes. At first, I controlled it with tablets and then got put onto insulin. Then one day my GP said to me ‘you’ve probably got LADA’ because of the age I was diagnosed.

LADA

LADA has similarities with type 1 and type 2 diabetes, so some people call it type 1.5 or type 1 ½. It’s usually diagnosed in people aged 30-50 years old and I was diagnosed aged 34. But whatever way round it is, I have diabetes.

LADA is a relatively new development and they are still doing research into it. My son works as a doctor and he said that a number of patients have been diagnosed the way that I have and have a similar story to me. 

Family history

My dad also had diabetes but I was young at the time and I was busy doing my own stuff. I knew he had trouble with his eyes and agonised over stuff. It was never explained to me at that time that the stuff he was going through could happen to me.

At first, I took metformin tablets but they were not working so I was then put on insulin. That was a big hurdle for me to overcome. Having to inject yourself four times a day and trusting yourself to do it. It was the most agonising and mentally challenging thing I have ever done. But it’s a way of life now.

When I tell someone what I have to do every time I eat a meal they always say ‘oh my word’. I say that’s only half of it. There’s lots of talk about mental health at the minute and rightly so, but I think it’s a case of having a positive attitude to blast through the negativity. 

It’s all a challenge. I don’t like injecting myself before I go to bed, I don’t like going to the pharmacy, I don’t like going to all these appointments that you have and all the other things people with diabetes have to go through to keep themselves healthy.

But it’s a choice and you have to be positive about it all because it’s your life. 

What I wished I knew when I was first diagnosed?

When I was first diagnosed with diabetes, I wish I had known that Diabetes UK was as good as it is. If I knew then what I know now, I would probably feel a lot happier and optimistic. 

I have done many promotional stalls on behalf of the charity and I’m quite happy to travel a couple of hours to set up a stall and talk to people about knowing their risk.