How I learned to live with type 5 diabetes
This April, the International Diabetes Foundation officially recognized a new category of diabetes, type 5.
An estimated 25 million people are thought to suffer from this little-known condition. 830 million people those who suffer from the more common forms of diabetes around the world – but I’m probably one of them too.
situation uniquely linked to chronic malnutrition The first clues to its existence came from poverty-stricken Jamaica in the 1960s, but scientists only reached international consensus on the classification earlier this year.
Type 5 diabetes mostly affects weak or experienced teenagers and young adults. Severe food insecurity as a child. The stress of malnutrition early in life appears to prevent the pancreas from producing enough insulin as adults.
Professor of Endocrinology at Lund University in Sweden and Type 5 specialist Dr. “Years of malnutrition inhibit the growth of the pancreas, the organ responsible for producing insulin, the hormone that regulates blood sugar, causing the body to fail to produce enough insulin,” Allan Vaag told the Telegraph in November. “These people are often among the poorest in the world.”
My story couldn’t be more different. I grew up in the UK, where there was abundant access to food and quality nutrition.
But I was born in the 0.2 percentile weight bracket, which means I weighed less than 99.8 percent of other babies, and my weight remained abnormally low throughout my childhood, not because of food insecurity but because of my difficult relationship with food.
My relationship with food only started to develop in college. However, as my weight started to increase, I started to feel sluggish and dizzy whenever I got hungry. My energy level was zero.
There are no hard and fast rules for managing atypical diabetes. -Simon Townsley
When I was 23, I was diagnosed with “non-specific” diabetes. At 68 pounds, I showed telltale signs of insulin resistance, which causes type 2, a type of diabetes linked to obesity. But I was about the same weight as most of my friends.
I started using finger prick blood tests to check my blood sugar levels and taking oral medication to stabilize them. I was told that the most important thing I could do to improve my condition was to lose weight; but for me this is a slippery slope that carries the risk of obsession.
What I lacked in the first few months were answers. My endocrinologist, who is also a woman of Indian descent, explained: South Asians are prone to insulin resistancesomething that could hark back to the times of feast and famine under colonial rule. He said that even if the same weight did not cause problems for other people, my body would definitely not be able to tolerate the few extra pounds I gained as an adult.
Since there was no better alternative, he referred me to a Type 2 diabetes clinic. However, people with Type 2 generally do not experience dizziness and fainting when they are hungry. The truth is that there are no hard and fast rules for managing atypical diabetes.
When I entered the type 2 clinic for the first time, I was surprised by my own sense of shame. Diabetes, especially the kind associated with obesity, carries a huge stigma.
I usually don’t bother explaining to my friends that I don’t have type 2 in the normal sense, or that my story shows clear signs of type 5. Most people have never even heard of type 5, including the doctor who last performed my diabetic review.
Early trials show type 5 can be managed with nutritional support, oral medication and low doses of insulin when necessary – Simon Townsley
According to Professor Vaag, diabetes is not always as categorical as many clinicians think.
“It is clear that malnutrition in early childhood has profound effects on pancreatic function,” he said. “But there isn’t always a simple explanation. We still need 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 mix of the two.”
There is still no guidance on how people with type 5 diabetes should be treated or any path to diagnosis.
Fortunately, The International Diabetes Foundation recently established a Working Group To develop formal diagnostic criteria and treatment guidelines for type 5. Early trials suggest that type 5 can be managed with nutritional support, oral medication, and low-dose insulin when necessary.
I can’t wait to see what the Working Group discovers because managing my own diabetes has been largely a matter of learning through trial and error. Many people with type 5 are currently misdiagnosed as having type 1 or type 2 and given the wrong support.
Preventing type 5 diabetes in the developing world largely involves addressing the root causes of food poverty. But even in the West, it may be useful to point out to parents of underweight children that their children are at increased risk of developing Type 5. If I had known this, maybe I would have saved myself a lot of time wondering why my body wasn’t working properly.
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