Kim M.

Rename Type 1 Diabetes Please!

In my last post, I talked a lot about the confusion between type 1 and type 2 diabetes. As parents of kids with type 1 diabetes, it’s really hard to see our children go through the physical struggles associated with the disease, but it’s even harder to see them struggle emotionally. People will often accuse those with type 1 of bringing the disease on themselves because of poor diet and exercise choices. I don’t know how many times Kaitlyn and I have gotten the question, “Did you eat a lot of sugar when you were a baby?”

The misconception is everywhere — friends, neighbors, teachers. Even healthcare professionals sometimes don’t understand that there’s a difference between type 1 and type 2 diabetes. That’s why I think renaming diabetes would be such a good way to help people understand these important differences. Here are a few:

Cause: Type 2 may be caused in part by diet and exercise choices, whereas the cause of type 1 is not linked to diet or exercise.

Risk factors: There are many more immediate risks and dangers associated with hyperglycemia and hypoglycemia with type 1. The swings in blood sugar levels can be much bigger and therefore the risks are much higher — diabetic ketoacidosis (DKA), seizures, even death.

Treatment and management: Whereas patients with type 2 can often manage diabetes with medicine and/or diet and exercise, type 1 management is dependent on insulin. Without it, our kids with type 1 would die — period. It’s a 24/7 kind of thing. Casual management or denial does not work, especially for those with type 1.

Don’t get me wrong, I’m not criticizing those with type 2. My dad has type 2, and I love him more than anything. Kaitlyn and my dad have a special bond because of their diabetes, and they support each other. But they also recognize that diabetes is very different for each of them. Having different names for type 1 and type 2 could help people see these important differences and maybe help both groups toward their management goals.

Apparently, I’m not the only one who thinks a rename would be a good idea. As I was researching this, I found that there are groups out there who are gathering signatures to petition the American Diabetes Association and other organizations to change the names. When I added my name to the petition, they had 15,744 signatures! The group suggested renaming type 1 as “autoimmune diabetes” and type 2 as “insulin resistance onset diabetes.”

Those names make a lot of sense to me, but how about we remove the word “diabetes” altogether. Type 1 could be renamed “The Awesome Disease.” Of course, I’m kidding, but I think that as long as we share the name “diabetes,” there will always be confusion.

There are also those who argue against renaming the diseases. They think that a rename would cause even more confusion and create an even bigger divide between type 1 and type 2. They believe that renaming would be an uphill battle that is not worth fighting. They say that our time should be spent making meaningful changes that actually help people live better with diabetes.

I agree that it is an uphill battle. However, I think it’s a battle worth fighting. It might help our kids live better with diabetes. Not only could it lessen some of their emotional battles tied to how people perceive them, but it could help others understand the severity of their disease, thus keeping them safer. They’ve made changes to the names in the past — juvenile diabetes and adult onset diabetes, insulin dependent and non-insulin dependent, type 1 and type 2. And if we’ve changed it before, why not again?

 

Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring. Jen and Kim are real moms of kids with type 1 diabetes and have been compensated for their contributions to this site.

 

Related topics:
Type 1 and Type 2 Diabetes: What’s the Difference?
Newly Diagnosed: How to Answer Questions From Family
Top 10 Things Never to Say to a T1D Parent

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