In April, the International Diabetes Foundation officially recognized a new category of diabetes – type 5.
An estimated 25 million people suffer from this little-known condition – a tiny fraction 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 hints of its existence came from poverty-stricken Jamaica in the 1960s, but it was only earlier this year that scientists reached an 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 early in life appears to prevent the pancreas from producing enough insulin when they are adults.
“Years of malnutrition stunt the growth of the pancreas – the organ responsible for making 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 a Type 5 expert, told the Telegraph in November. “These individuals are often among the poorest in the world.”
My story couldn’t be more different. I grew up in the UK with abundant access to food and quality nutrition.
But I was born in the 0.2 weight percentile, meaning I weighed less than 99.8% of other babies, and my weight remained abnormally low throughout childhood, not because of food insecurity, but because of a difficult relationship with food.
It wasn’t until university that my relationship with food started to improve. But as my weight started to increase, I started feeling weak and dizzy whenever I was hungry. My energy levels were zero.
There are no hard and fast guidelines for managing atypical diabetes – Simon Townsley
At 23, I was diagnosed with “non-specific” diabetes. At 68kg, I was showing telltale signs of insulin resistance – which is what causes type 2, the obesity-related type of diabetes. But I weighed about the same as most of my friends.
I started using finger prick blood tests to check my blood sugar and taking oral medication to even it out. I was told that the main thing I could do to improve my condition was to lose weight – but for me this is a slippery slope that risks becoming obsession.
What I missed in the first few months were the answers. My endocrinologist—a woman of Indian heritage like myself—explained that South Asians are prone to insulin resistance, something that could harken back to periods of feast and famine under colonial rule. She said my body just couldn’t handle the few extra pounds I put on as an adult, even though the same weight wouldn’t cause problems for other people.
Lacking a better alternative, he referred me to a type 2 diabetes clinic. But people with type 2 don’t usually get dizzy and pass out when they’re hungry. The fact is that there are no hard and fast guidelines for the management of atypical diabetes.
Walking into the Type 2 clinic for the first time, I was surprised by my own sense of shame. Diabetes carries a lot of stigma, especially that associated with obesity.
I usually don’t 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 did my last diabetes assessment.
Early studies suggest that type 5 can be managed with nutritional support, oral medication and low-dose insulin where needed – Simon Townsley
According to Professor Vaag, diabetes is not always as stark as many clinicians like to believe.
“It is clear that early childhood malnutrition has profound effects on pancreatic function,” he said. “But there isn’t always a simple explanation. We still have to figure 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 combination of the two.”
There are still no guidelines on how people with type 5 diabetes should be treated or any way to diagnose it.
Fortunately, the International Diabetes Foundation recently launched a task force to develop formal diagnostic criteria and treatment guidelines for type 5. Early studies suggest that type 5 can be managed with nutritional support, oral medication, and low-dose insulin where needed.
I look forward to seeing what the task force discovers, as 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 have 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 signaling to parents of underweight children that their child’s risk of developing type 5 is increased. If I had known that, I might have saved myself a lot of time wondering why my body can’t function properly.
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