In April this year, the International Diabetes Foundation officially recognized a new category of diabetes – type 5.
An estimated 25 million people are thought to have this little-known disease – a small fraction of the 830 million people worldwide with the more common form of diabetes – but I may be one of them.
The first clues to the disease’s unique link to chronic malnutrition came from impoverished Jamaica in the 1960s, but it was only earlier this year that scientists reached an international consensus on its classification.
Type 5 diabetes primarily affects adolescents and young adults who are underweight or who experienced severe food insecurity as children. The stress of malnutrition early in life appears to prevent the pancreas from producing enough insulin in adulthood.
Dr. Allan Vaag, professor of endocrinology at Lund University in Sweden and an expert on type 5 diabetes, told The Telegraph last November: “Years of poor nutrition can hinder the growth of the pancreas, the organ responsible for producing insulin and the hormone that regulates blood sugar, causing the body to not produce enough insulin.” “These people tend to be among the poorest people in the world.”
My story is completely different. I grew up in the UK with access to a wealth of food and quality nutrition.
But I was born in the 0.2nd 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 poor relationship with eating.
It wasn’t until college that my relationship with food began to improve. But as my weight started to creep up, I started feeling weak and dizzy whenever I was hungry. My energy level was zero.
There is no hard and fast guide to treating atypical diabetes – Simon Townsley
At 23, I was diagnosed with “non-specific” diabetes. When I weighed 68kg, I developed clear signs of insulin resistance, which is what leads to type 2 diabetes (a type of diabetes associated with obesity). But I weigh about the same as most of my friends.
I started using finger stick blood pricks to check my blood sugar levels and taking oral medications to balance them. I was told that the main thing I could do to improve my condition was lose weight—but for me, that was a slippery slope, and there was a risk of obsession.
What I lacked in those first few months were answers. My endocrinologist (a woman of Indian descent like me) explained that South Asians are prone to insulin resistance, probably dating back to the feast and famine days of colonial rule. She said my body simply couldn’t handle the few pounds I’d gained as an adult, even though that same weight wouldn’t cause any problems to anyone else.
For lack of a better option, she recommended me to a type 2 diabetes clinic. But people with type 2 diabetes don’t usually feel dizzy and faint when they’re hungry. In fact, there are no hard and fast guidelines for treating atypical diabetes.
When I first walked into a Category II clinic, I was surprised at how ashamed I felt. There’s a lot of stigma attached to diabetes, especially when it’s associated with obesity.
I usually don’t bother explaining to friends that I don’t have type 2 diabetes in any normal sense, nor that my story shows signs of type 5 diabetes. Most people have never even heard of type 5 diabetes, including the GP who last checked me for diabetes.
Early trials suggest type 5 diabetes can be controlled with nutritional support, oral medications and low-dose insulin where necessary – Simon Townsley
Professor Vaag said diabetes was not always as clear-cut as many clinicians thought.
“It is clear that malnutrition in early childhood has profound effects on pancreatic function,” he said. “But there’s not always a simple explanation. We still need to figure out how to differentiate between Type 5 and Type 2, or whether it makes more sense to think that some people (perhaps like you) have a mix of the two types.”
There is currently no guidance on how to treat people with type 5 diabetes or any diagnostic pathways.
Thankfully, the International Diabetes Foundation recently formed a working group to develop formal diagnostic criteria and treatment guidelines for type 5 diabetes. Early trials suggest that type 5 diabetes can be controlled with nutritional support, oral medications and, when necessary, low-dose insulin.
I look forward to seeing what the task force finds, because managing my own diabetes is very much a matter of learning through trial and error. Currently, many type 5 patients are misdiagnosed as type 1 or type 2 patients and receive incorrect support.
In developing countries, preventing type 5 diabetes primarily involves addressing the root causes of food poverty. But even in the West, it may be worth educating parents of underweight children that their children are at higher risk of developing type 5 diabetes. If I knew this, maybe I could save a lot of time wondering why my body isn’t functioning properly.
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