In a world without microscopes, diseases were known by their observable symptoms. Unbeknownst to the Ancient Greek physicians who coined the term, the name ‘diabetes’ (meaning ‘a siphon passing water’) lumped together several conditions that had nothing in common but excessive urination. Sir Thomas Willis, a physician in the 17th century, called diabetes the ‘Pissing Evil’ and introduced to Europe what most of the world already knew: the observation that some diabetics passed sweet urine, while the urine of other diabetics had no unique flavour. However it was another hundred years or so before Western medicine clearly recognised two distinct forms of diabetes through the names ‘diabetes mellitus’ (sweet diabetes) and ‘diabetes insipidus’ (tasteless diabetes).
A distinguished history
In the 19th and 20th centuries, the discovery of hormones led to an understanding of the mechanisms of the two diabetes. Although the obvious symptoms were similar to those of diabetes mellitus, it was found that diabetes insipidus was actually caused by a deficiency or resistance to the hormone arginine vasopressin (AVP).
Among other things, AVP performs the important function of stopping people urinating all the water out of their bodies until they die of dehydration.
Compared to diabetes mellitus, the treatment for diabetes insipidus proved relatively simple: supplementation with a synthetic version of the hormone, figuring out if it was actually a symptom of another disease, or, paradoxically, taking diuretics. Identifying, differentiating and explaining the pathology of these quite different diseases wasn’t enough to break their pseudonymous bond however.
Even though the two conditions had grown apart they were still not divorced – their extensive history together meant they still shared a name.
It takes a lot to rename a disease, especially diseases with histories as long as this one. It has happened before, for various reasons – the discovery that what were thought of as multiple diseases was actually one disease, where names eulogised unethical doctors or Nazi scientists, or where there was a stigmatising association with a group of people.
If one or both of the diabetes were to be renamed it would be for a new reason: to avoid misunderstanding by preventing diabetes insipidus being overshadowed by its more well-known namesake. As the numbers of people living with diabetes mellitus increase, the shortened term ‘diabetes’ has basically become synonymous with that particular condition. As such, people with diabetes insipidus constantly have to clarify that they don’t have that sort of diabetes.
While this confusion in itself was already an excellent reason to rewrite the medical dictionaries, the case for renaming diabetes insipidus became particularly urgent upon the death of Kane Gorny.
Words fail
Endocrinologists the world over will be familiar with the case of Kane, who went to hospital for a routine surgery and ended up dying of dehydration after the doctors and nurses treating him mistook his diabetes insipidus for diabetes mellitus.
After successfully recovering from a brain tumour a year earlier, 22-year-old Kane was left with diabetes insipidus as a result of the damage to his pituitary gland and brittle bones as a result of the cancer treatment. In 2009 he went into a London hospital for a hip replacement.
The endocrinology team at the hospital should have been alerted upon his admission, but weren’t. The doctors and nurses on the ward should have taken note of his hormone replacement medication, but didn’t.
Instead, Kane missed multiple doses of his medication and upon awaking from surgery became increasingly frantic, begging for water from nurses. Panicking, he called the police from his hospital bed, who arrived at the ward but were reassured by staff. Becoming progressively delirious and aggressive from dehydration, Kane was given a psychiatric assessment and sedated before being moved to a side ward and left alone.
When Kane’s mother arrived, a doctor apparently asked whether he was ‘always like this’. Further enquiry only resulted in Kane’s mother being dismissed by nurses and advised that missing a dose of medication wouldn’t do Kane any harm. A senior doctor ordered blood tests but too late – a few hours later Kane died of a heart attack brought on by dehydration.
Thinking he had diabetes mellitus, the staff had only been monitoring his blood sugar.
Making a name for itself
After learning of Kane’s case, the endocrinology community sprang into action. The past decade has seen endocrinologists arrange a global task force, develop education campaigns to teach clinicians about the existence of diabetes insipidus and the differences between it and diabetes mellitus, and commission an enquiry into the circumstances of Kane’s treatment and death.
One of the earliest and powerful solutions proposed was changing the name of diabetes insipidus so it would no longer carry the connotations of its famous alias.
In a survey sent out to >1000 people living with diabetes insipidus, 85% confirmed that they were in favour of changing the name to something more conveniently obscure. They were tired of having to continually explain the history of the word ‘diabetes’, but many had also experienced mistreatment similar to Kane’s.
While Kane’s case was an extreme example, the confusion between diabetes mellitus and diabetes insipidus had long been causing problems for patients, doctors, and carers.
Nomenclative nominees
A number of names were proposed. While it was clear that the ‘diabetes’ part of ‘diabetes insipidus’ needed to be removed, it was hard to know what should replace it. ‘Pituitary Insipidus’ wasn’t quite right – to the etymologists it was a mishmash and to the endocrinologists it inaccurately described the disease. ‘ADH Deficiency’ abbreviated to ADHD, which could again be easily confused again with another common disorder, and ‘Vasopressin Deficiency’ abbreviated to VD, implying it was sexually transmitted.
Being a pragmatic community, endocrinologists wanted a descriptive, logical name that adequately represented patients who were resistant to the effects of the hormone or deficient in making it. Finally, the names ‘arginine vasopressin deficiency (AVP-D)’ and ‘arginine vasopressin resistance (AVP-R)’ were settled upon.
While ‘diabetes insipidus’ will hang on for a little while in literature, living in brackets beside its successor to hint at continuity, it’s expected that it will gracefully fade away and retire happily to the history books.
