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The Queen of Carefully Organized Care

Talya, living with type 1 Gaucher disease

•  2 min read



Talya is an accountant by trade and a traveler at heart. She has been living with type 1 Gaucher disease ever since she can remember, and this condition has created many challenges for her. But Talya has a couple of key characteristics in her favor: her top-notch organizational skills and her self-confidence.

“I have everything in my life in a spreadsheet,” laughs Talya. “This includes restaurant recommendations, birthday party guest lists—you name it.”

While it’s in Talya’s nature to use binders and spreadsheets, there’s one area of her life where she thinks being organized is nonnegotiable: Gaucher.

“The administrative side of having Gaucher is just a huge extra challenge. All the insurance nonsense and organizing schedules and chasing down bills, and emails, and records. I realize not everybody loves a spreadsheet, but just organizing it all in a notebook or a binder and keeping it all in one place makes a huge difference.

I have a binder for my medical and lab results, and I have one for the bills and administrative stuff.

“I found it super helpful for when I have to fight a bill, or push back on coverage of a lab test, or even when I move and have to switch doctors. They say, ‘Well, send me all your files,’ and instead of trying to call the old doctor’s office to get them to check these files or send those records, I’ve got it all ready now.

“My mom probably had similar folders somewhere when I was growing up. But when I became an adult I said, ‘OK, I need an important records folder.’ That’s just part of managing my own care.”

For Talya, there are 2 major benefits of staying organized. For one, she is making it easier to manage her own care. And two, she is clearing time to focus on other things—like building a spreadsheet of new restaurants to try.

Tagged in: Being organized, Medical records

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