Based on our literature research there are two different views.
First - Some health care providers believe that the term “brittle” is an archaic term having no biological foundation and therefore should not be employed. To them it is neither, a form of or type of - diabetes. Instead they treat this uncontrolled rapid shifting of blood glucose as an uncommon complication of type 1 diabetes. They dismiss the term brittle favoring the designation Type 1 – uncontrolled.
Second, there are those who believe brittle diabetes is very real and distinguishable from stable type 1 diabetes. They utilize “brittle” to describe a very rare Form of type 1 diabetes which occurs in less than 0.3% (3/1,000) of insulin dependent type 1 diabetics. That would equate to approximately 4,500 individuals with brittle type 1 diabetes (BT1D) in the United States - a rarity indeed.
NOTE: The National Institute of Health now recognizes Brittle Type 1 Diabetes (BT1D) as a rare disease in its own right and a separate and distinct form of type 1 diabetes.
There are three distinct forms of brittle diabetes: those individuals who tend towards hyperglycemia (raised BG) leading to episodes of diabetic ketoacidosis (DKA), those tending towards hypoglycemia (Low BG) leading to hypoglycemic coma and those that exhibit mixed instability.
The Brittle Diabetes Foundation (BDF) favors the use of the term “brittle diabetes” out of a concern that a patient labeled as uncontrolled Type 1 will be grouped in with stable Type 1 diabetics and treated solely by attempting to stabilize BG levels. This is a disservice to a person diagnosed as being uncontrolled or brittle. Failure on the part of the patient to adequately describe their symptoms and/or failure on the part of a physician to give consideration to what a patient is saying "I'm doing everything correctly but it still comes out wrong" can lead to a misdiagnosis of the brittle condition. When coupled with the rarity of the disease, the health care provider may be led to suggest “non-compliance” as the cause of the patient’s inability to stabilize sugar levels. This adds to the brittle patient’s frustration and may negatively impact their emotional stability.
Before pointing a finger labeling his patient as non-compliant, the physicin should take the time to determine the patient's level of glucose instability and, if brittleness is suspected, be willing to employ the necessary time and resources in determining its likely cause.
It is important to remember that brittleness, the rapid uncontrolled shifting of BG levels, always has a secondary cause that is often treatable. Diagnose the cause, treat the cause and help return the patient to a stable type 1 condition.