At 28, Joyce should be in the prime of her life.
Instead, each week is a struggle and a careful negotiation of getting her diabetes to stabilise.
“It’s very rare that my blood sugar is at normal levels. It’s either too high or too low despite being on medication. The fluctuations have been so bad lately that I dread going to the clinic because there is always an issue,” says the mother of one who currently lives in Gugulethu.
Unlike most of the roughly 2.3 million adults in South Africa living with diabetes – an estimated prevalence of 7.2% – who know whether they have Type 1 or Type 2 diabetes, Joyce does not.
Weighing under 40kg, she lives with constant uncertainty, unsure whether she will need to remain on insulin permanently or eventually return to the oral medication she began taking four years ago.
Her doctors suspect that she falls into a different category of diabetes – a malnutrition-related type that has recently been classified by the International Diabetes Federation (IDF) as “Type 5 Diabetes”.
At the biannual World Diabetes Congress held in Bangkok last April, the federation announced the formation of a dedicated working group of leading endocrinologists tasked with developing new treatment guidelines for this neglected disease. The group’s work is expected to be completed by 2027.
Type 1 diabetes is caused by an immune attack on insulin-producing cells, and
Type 2 diabetes is linked to insulin resistance and lifestyle factors such as poor diet or lack of exercise.
Researchers believe Type 5 diabetes results from prolonged childhood malnutrition that damages the pancreas and limits insulin production.
Due to extremely low insulin reserves, patients with this form of diabetes may develop dangerously low blood sugar when given insulin.
They also do not respond well to tablets because most diabetes tablets are designed for Type 2 diabetes, where the main problem is insulin resistance.
This makes their treatment more complex, with patients often requiring individualise treatment regimen. Experts believe that in countries with a high burden of undernutrition, such as South Africa, where one in four children under the age of five suffer from stunting (too short for their age), recognising the vulnerability of malnourished people to Type 5 diabetes could help drive targeted screening, and earlier diagnosis.
Dr Zaheer Bayat, head of internal medicine and endocrinology at Helen Joseph Hospital, and spokesperson for the Society for Endocrinology, Metabolism and Diabetes of South Africa, says the organisation has not yet adopted a formal position on classifying Type 5 diabetes.
However, he says clinicians in South Africa do see diabetes cases that do not fit neatly into existing categories, including lean patients with signs of insulin deficiency who do not match the typical profiles of Type 1 or Type 2 diabetes. He adds that data on the prevalence of this condition in the country remains limited.
“The concept of a nutrition-related subtype of diabetes is biologically plausible,” he says, adding that clinicians currently manage these patients pragmatically through individualised treatment approaches, with many being treated using existing pathways for Type 1 and Type 2 Diabetes.
However, Bayat says, it is still too early to know whether formally classifying the condition would significantly change current treatment practices. “Any possible changes should be guided by strong evidence, expert consensus, and alignment with international guideline bodies,” he says.
J-Type diabetes
First identified in the 1950s by a British physician, Philip Hugh-Jones, in Jamaica, the condition was initially named J-type diabetes, with the “J” referring to Jamaica.
Observed mainly among young, underweight individuals with a history of malnutrition and with a BMI of under 18.5, it was later recognised by the World Health Organisation (WHO) in 1985 as “malnutrition-related diabetes mellitus”.
The WHO later removed the condition from its official classification in 1999, citing insufficient scientific evidence.
Public health specialist and chairperson of the Diabetes Alliance, Patrick Ngassa Piotie, says the alliance has not yet taken a formal position on the growing discussion around recognising Type 5 diabetes, but if recognising this distinct form of diabetes leads to better treatment and improved outcomes for patients with a history of malnutrition, “then it is a conversation that policymakers and experts should engage with thoughtfully”.
This is especially important for low and middle-income nations, like South Africa, which are grappling with malnutrition.
“South Africa faces a complex epidemiological landscape shaped by inequality, food insecurity, and both undernutrition and overnutrition,” he says.
Piotie says if diabetics with a history of malnutrition are not properly recognised within current classifications, “it raises important concerns about equity and quality of care”.
He argues that regardless of whether “Type 5 diabetes” is formally recognised, SA’s diabetes response needs updating.
The country’s national guidelines, last updated in 2014, do not reflect major advances in diagnosis, treatment and patient-centred care, increasing the risk of misdiagnosis and complications, particularly in the resource-constrained public sector where advanced diagnostic tests are not routinely available.
“A review of the national diabetes management guidelines is long overdue. This would provide an opportunity to assess whether current tools allow clinicians to identify atypical or less common diabetes presentations, including those potentially linked to lifelong undernutrition,” he says.
While acknowledging childhood malnutrition as a risk factor for diabetes, the national health department says it will not revise its current guidelines, at least not until the International Diabetes Federation (IDF)’s Working Group finalises diagnostic criteria and stronger evidence becomes available.
“It is not advisable to introduce a new classification without agreed clinical case definitions,” says department spokesperson Foster Mohale.
The current guidelines recognise four categories: Type 1, Type 2, gestational diabetes, and diabetes secondary to other causes.
Mohale adds that the role of genetics and nutrition in diabetes is already well established, which is why medical nutrition therapy forms part of care for prediabetic individuals, high- risk groups and people living with diabetes.
“The adoption of alternative classifications requires robust peer-reviewed evidence and broad expert consensus before any policy or guideline revisions can be undertaken,” he says.
Finding innovative ways to manage
Without guidelines tailored to her condition, Joyce relies not only on medication but also on healthy eating to manage her diabetes. She says a local community garden in Gugulethu, which provides affordable organic vegetables to people living with chronic illnesses, has helped stabilise her condition.
“Sometimes doctors prescribe vitamins if they have, but they always stress the importance of eating vegetables and protein too, so having access to fresh veggies has made a huge difference,” she says.
Known as Sebenza Garden, the project is run by eight local women who also live with chronic illnesses. Besides selling affordable vegetables, the group teaches residents how to grow food in backyards and small spaces.
“A lot of us living with chronic conditions are told to eat healthy food, but many people cannot afford vegetables, especially organic produce,” says Noluthando Mazwi, who started the garden seven years ago. “We encourage people to grow their own food, even in very small spaces such as old car tyres. The goal is not to make money, but to help people live healthier lives.” — Health-e News
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