Dan at Euston Train Station sat at a table with a coffee and a cookie! He is smiling at the camera.
About Ataxia and us Living with a Disability

Type 1 Diabetes & FA

Friedreich’s Ataxia and Type 1 Diabetes

Around 10% of people with Friedreich’s Ataxia also have Type 1 Diabetes (T1D). Dan is part of that 10% having been diagnosed with T1D when he was 13 years old. 

Just over a week ago, Dan had a severe hypoglycaemic episode that we had to call an ambulance for. Since then I’ve been thinking about how Type 1 Diabetes is a really misunderstood condition. We also don’t talk much about this part of Dan’s condition on our blog. So, I thought now would be a good time to write about it and try to raise some awareness.

Aged 13, Dan became ill when he was on holiday with his friend’s family. He was constantly thirsty, going to the toilet loads and his muscles were cramping. He went home and his Mum took him to the doctors, who sent him straight to the hospital. Dan spent several days in hospital with Diabetic Ketoacidosis (which I’ll talk about in a bit!). He was put on an insulin drip to reduce the sugar that had built up in his body and help flush his kidneys through as they had been working extra hard to filter his blood. Thankfully, Dan recovered and was sent home with insulin, which he’s been injecting every day for the 17 years since.

What is Type 1 Diabetes?

Unlike Type 2 Diabetes, it isn’t caused by diet or weight or lifestyle- it just happens and isn’t predictable or preventable. In Dan’s case it’s linked to the Friedreich’s Ataxia, even though he was diagnosed with T1D 6 years before he found out he had FA. 

When you have Type 1 diabetes, your body attacks the cells in your pancreas that make insulin, so you can’t produce any insulin at all. In Dan’s case, as FA causes the degeneration of cells in the body, it was the cells in his pancreas that were affected first, therefore causing the diabetes. We all need insulin to survive. It does an essential job; it allows the glucose in our blood to enter our cells and fuel our bodies.

When you have Type 1 diabetes, your body still breaks down the carbohydrates from food and drink and turns it into glucose (sugar). But when the glucose enters your bloodstream, there’s no insulin to allow it into your body’s cells. More and more glucose then builds up in your bloodstream which can seriously damage your heart, kidneys, eyes and skin (particularly on your feet). 

High blood sugar can be a medical emergency. Diabetic ketoacidosis (DKA) is a serious problem that can happen in people with diabetes if their body starts to run out of insulin. When this happens, harmful substances called ketones build up in the body, which can be life-threatening if it’s not found and treated quickly. 

Happy when his blood sugar is low enough for him to have a cookie with his coffee!

Managing T1D

Dan usually has very good control of his diabetes (in fact, his consultants often tell him he’s one of the most well controlled diabetics they see!). This control involves checking his blood sugar levels regularly throughout the day and before eating. He injects insulin after every meal and each evening he also has a ‘long-lasting background insulin’ injection. You really cannot be scared of needles if you have diabetes! 

Occasionally, you can ever so slightly miscalculate the amount of insulin you do, or do a bit too much exercise without eating and this can cause low blood sugar (hypoglycaemia) which like high blood sugar, can also be a medical emergency. It’s a real balancing act and it can be quite difficult to control diabetes! 

Just over a week ago, Dan started to feel that his blood sugar was dipping too much about 20 minutes after he did his insulin. Usually a bottle of lucozade or a snack bar would be enough to correct it. This time though, the lucozade had no real effect and Dan started to feel worse. So he had an emergency oral glucose syringe. But still, that wasn’t working quickly enough and he was really shaky and felt quite ill. He did a blood test and the result was 2.4mmol/L. Normal blood glucose is between 4 and 7.8mmol/L. 

Despite having another oral glucose syringe, a chocolate bar and about 8 teaspoons of honey Dan started to loose consciousness so I rang an ambulance. I kept doing finger-prick tests for him and could feel panic rising inside me as the number wasn’t getting higher. It was so scary. By the time the paramedics arrived (which was after about 10 minutes, but felt like an hour) Dan was a bit more ‘with it’ and had another few teaspoons of honey. 

Thankfully, he started to recover and after monitoring him at home for about 45 minutes the paramedics said he was ok and wouldn’t need to go into hospital unless it happened again (which was a HUGE relief as we’d been successfully ‘shielding’ for over 3 months during the Coronavirus pandemic!). Since then he’s been ok and it hasn’t happened again, phew! 

Blood Glucose Sensor

Before I go, we just wanted to quickly write a bit about the new sensor that Dan has started using to monitor his blood sugar. Doing the finger-prick blood test is quite fiddly for anyone, let alone someone with ataxia, so his diabetes nurse recommended the new Freestyle Libre sensor for him. It’s a small needle which sits in his arm with a plastic sensor. He scans it with his phone and it tells him what his glucose level is!! 

At first, he had a few teething problems with it. You’re supposed to change the sensor every 2 weeks but the first one didn’t even last 2 days as Dan caught it and ripped it out *ouch*.

The second one didn’t seem to be working properly; the initial reading was quite high so Dan did a finger-prick test to double check and the sensor was significantly inaccurate (giving a glucose reading much higher than it actually was). It was a good job that he did the finger-prick test and didn’t trust that initial reading; if he had done insulin to bring his sugar levels down based on what the sensor said, it would’ve been disastrous and possibly even fatal. So even though they say you don’t need to check the initial sensor reading with a blood test, we would 100% recommend you do!

He left it on for a couple of days while still doing finger-prick tests, to see if it would sort itself out and calibrate. It didn’t, so he changed it. *Touch wood* since then all the others seem to have been fine and Dan is finding it really useful.

With the app on his phone that connects to the sensor, there are all sorts of graphs and records that are automatically created so he can see trends and what his blood sugar has been doing overnight. Dan is a bit of a tech nerd; he loves data and graphs and stuff, so he’s found the sensor really good for monitoring his diabetes even better than before. 

If anyone with T1D is considering getting the sensor, Dan says: “Do it”. That is the most in-depth quote I could get off him- for those who know Dan he’s very ‘to-the-point’! 

Here’s a video we’ve put together to show how it works:

Using the Freestyle Libre Glucose Sensor

If anyone wants to ask any questions about the sensor feel free to message us!

Thank you for reading this… it’s been too long since I wrote a new blog post, but I’m glad to be back!

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1 Comment

  1. Sam Duffy says:

    Hi I’m the mother of Ruby, she was diagnosed with FA aged 16, now 20. Love your Instagram and now your posts, really natural and informative. Good luck with the new home.

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