HOW I LEARNED TO LIVE WITH TYPE 5 DIABETES
This April, the International Diabetes Foundation formally recognised a new category of diabetes – type 5.
An estimated 25 million people are thought to suffer from this little-known condition – a tiny slice of the 830 million people who suffer from more common types of diabetes worldwide – but I’m probably one of them.
The condition is uniquely linked to chronic undernutrition and the first clues of its existence came from poverty-stricken Jamaica during the 1960s, but it was only earlier this year that scientists reached international consensus on its classification.
Type 5 diabetes mostly affects teenagers and young adults who are underweight or experienced severe food insecurity as children. The stress of malnutrition in early life appears to prevent the pancreas from producing enough insulin when they are adults.
“Years of undernutrition stunt the growth of the pancreas – the organ responsible for producing insulin, the hormone that regulates blood sugar – leaving the body unable to produce enough of it,” Dr Allan Vaag, Professor of Endocrinology at Lund University in Sweden and an expert on Type 5 told the Telegraph in November. “These individuals are often amongst the poorest in the world”.
My story could not be more different. I grew up in the UK, with abounding access to food and quality nutrition.
But I was born in the 0.2 weight percentile, meaning I weighed less than 99.8 per cent of other babies, and my weight stayed abnormally low throughout childhood, not to due to food insecurity but a difficult relationship with eating.
Only at university did my relationship with food start to improve. But as my weight started to climb, I started feeling weak and dizzy whenever I got hungry. My energy levels were zero.
Aged 23, I was diagnosed with “non-specific” diabetes. At 68kg, I displayed telling signs of insulin resistance – which is what causes type 2, the kind of diabetes linked to obesity. But I weighed much the same as most of my friends.
I started using finger-prick blood tests to check my blood sugar levels and taking oral medication to even them out. I was told that the main thing I could do to improve my condition was to lose weight – but for me that’s a slippery slope that runs the risk of obsession.
What I lacked in those first few months were answers. My endocrinologist – a woman of Indian heritage like me – explained that South Asians are predisposed towards insulin resistance, something which might hail back to periods of feast and famine under colonial rule. She said that my body simply couldn’t tolerate the few extra pounds I’d put on in adulthood, even if the same weight would cause no problems for other people.
For lack of a better alternative, she referred me to a Type 2 diabetes clinic. But people with Type 2 don’t usually get dizzy and faint when hungry. The fact is there are no hard and fast guidelines for managing atypical diabetes.
Walking into the type 2 clinic for the first time, I was surprised by my own sense of shame. Diabetes bears great stigma, especially the kind that is associated with obesity.
I don’t usually bother explaining to friends that I don’t have type 2 in any normal sense, nor that my story shows telltale signs of type 5. Most people have never even heard of type 5, including the GP who last conducted my diabetic review.
According to Professor Vaag, diabetes is not always as categorical as many clinicians like to think.
“It’s clear that early childhood malnutrition has profound effects on pancreatic function,” he said. “But there’s not always a simple explanation. We still need to work out how to distinguish type 5 from type 2 – or whether it makes more sense to think that some people, perhaps like you, have a mix of the two.”
There’s still no guidance on how people with type 5 diabetes should be treated or any pathway for diagnosis.
Thankfully, the International Diabetes Foundation has recently launched a Working Group to develop a formal diagnostic criteria and therapeutic guidelines for type 5. Early trials suggest that type 5 can be managed by nutritional support, oral medication and low-dose insulin where needed.
I look forward to seeing what the Working Group discovers because managing my own diabetes has largely been a matter of learning from trial and error. Many people with type 5 are currently misdiagnosed as type 1 or type 2 patients and put on the wrong support.
In the developing world, preventing type 5 diabetes largely involves addressing the root causes of food poverty. But even in the West, it might be worth flagging to parents of underweight children that their child’s risk of developing Type 5 is elevated. If I’d known this, perhaps I’d have saved myself lots of time wondering why my body was unable to function properly.
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2025-12-09T06:05:42Z
