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My Pancreas, My Identity

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Before diabetes, I never thought a health condition would become such a big part of my identity and my life. My diagnosis has always been grey at best. A few years ago now, I guest blogged for mySugr about what it was like to be living with a condition that didn’t seem to fit anywhere

It’s been many years now since I’ve had to think about coping with a new diabetes diagnosis. In 2012, my endocrinologist ran a test, which determined that I was insulin deficient. Based on that, I was rediagnosed as having type 1b or idiopathic diabetes. In other words, it’s similar to type 1 diabetes but what I have is not an autoimmune disease.

Because of that reclassification and the ticking of a different box on a piece of paper, I was finally allowed to start using an insulin pump along with accessing other services only for people with type 1 diabetes such as the DAFNE program. (In Australia, insulin pump consumables are only subsidised for people with type 1 diabetes or gestational diabetes)

In short, things worked out for me because I was able to get the treatment that worked best for me simply because we ticked a different box on a piece of paper.

Last year, I was finally able to get some genetic testing done. I met with a genetic counselor who knew all about Maturity Onset of Diabetes of the Young (MODY) only for her to tell me I didn’t fit into the known MODY categories. But she was happy to take my blood and run it through the gene sequencing process. They were to contact me should they find any results.

I was told not to hold my breath for any results based from our chat and my family history.

Last week, I received a letter for an appointment because they found something. Coincidentally, I caught up with a new friend from #OzDOC who told me they received the same letter but were already told of their result due to a medical emergency.

They had found a new MODY type and my friend fitted that category perfectly.

giphy

Could this appointment finally provide me with the answer and closure I have started chasing since my diagnosis? Or will it just bring more questions?

¯\_(ツ)_/¯

All I know is that May 11 can’t come sooner!

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Pancreatically challenged, diabetes advocate, PhD student and dietitian - working to positive changes within the diabetes community and healthcare setting. Although diagnosed at age of 19 with T2DM, the type of diabetes I have is under constant debate. Finally pumping as of March 2014.

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