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September 26th, 2010
I sometimes think those of us advocating for type 1 (juvenile) diabetics would be better off if our disease had a different name.
The vast majority of diabetics are type 2 diabetics. Genetic and metabolic studies have revealed that type 2 diabetes is a large group of diseases that range from seemingly healthy people with high glucose after meals to people with declining insulin secretion who require insulin. Type 2 diabetes has a strong inherited component, with identical twin concordance of 90%. Most type 2 diabetics are never diagnosed, going through life unaware of their diabetes. Many can control their diabetes with diet and exercise alone. Many take pills of various sorts and some require insulin.
In contrast only a small minority of diabetics are type 1. Type 1 diabetes is autoimmune and always features near total death of insulin-producing cells. Type 1 diabetes is weakly inherited with identical twin concordance of 30%. All type 1 diabetics are diagnosed — the symptoms cannot be denied. And most important, type 1 diabetics will die without insulin injections — they are utterly dependent on insulin to live.
Yet these two very different diseases are enmeshed in the public mind.
For type 1 diabetes advocates this can be a blessing. Of course it is good to share the name of the number one global health health crisis. If type 1 were cured tomorrow diabetes would remain the biggest health threat in the developed world from type 2 alone. Because insulin loses its potency with age, by some definitions over half of seniors have diabetes, so “diabetes” is a huge and growing disease, growing as more people live to an old age and more populations adopt the low exercise, high calorie life of the developed world.
But the role of exercise and eating highlights another big difference. Most people with type 2 diabetes can be cured by the seemingly simplest means: eating reduced amounts of higher quality foods coupled with regular aerobic exercise. Type 2 diabetes is a lifestyle disease in all but its most severe manifestations. The general knowledge that diabetes is linked to lifestyle emerges in the notion that diabetics (including type 1 diabetics) can mend their ways and cure themselves if they had the will.
Type 1′s know this is nonsense. In our disease the immune system attacks the body, killing the cells in the pancreas that make insulin. The process usually takes years and cannot be reversed. There is not a single convincing case of spontaneous remission in millions of recorded type 1 diabetics — it is truly irreversible. And try controlling type 1 diabetes with diet and exercise! That indeed was the best therapy available pre-insulin. Starvations diets could extend life by months, but diabetes was nevertheless a death sentence within a year.
I have been asking around for suggestions relating to a type 1 diabetes rebranding. A popular idea is to use the name of a type 1 diabetic celebrity. But the preference for the name seems to be generational. Nick Jonas’ disease? Adam Morrison’s Disease? MTM’s Disease? Bret Michael’s Disease? Anne Rice’s Disease? Jay Cutler’s Disease? We’d have to keep changing the name to keep up with the times. Who now remembers Lou Gehrig and his disease?
One suggesting is Incurable Diabetes, or ID. It stops you in your tracks and is a good contrast with type 2. But I hope that the Islet Sheet will make it Curable Diabetes.
What do you think is a better name for our diabetes? Scientific names over the centuries have included diabetes mellitus, ketosis-prone, juvenile-onset, type 1, and insulin-dependent. So there is precedent for a name change.
Put your name idea in the comment section, with a rationale, and we’ll pick the best for a poll. Then maybe we’ll petition the doctors for a name change.