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Barry
Hometown
Madison, WI
Diagnosed
hATTR amyloidosis in 2015
Started treatment
October 2016
Time to diagnosis
Childhood until he was 44
Family history
Hereditary (Father, grandfather)

Patient Ambassador

Barry K.

"The most important thing in my life was my son and that meant fighting for my health no matter the cost."
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Barry was forty-seven the year his son turned twelve, and the year a routine physical turned into something he hadn't planned for. He remembers the doctor's pause before the words came — the small, careful breath that told him everything before the sentence did. He drove home that afternoon the long way, past the field where his son played baseball on Saturdays, and tried to imagine telling him. What followed was not a single fight, but a series of small ones — appointments, second opinions, the long quiet hours in waiting rooms with a paperback he couldn't focus on. Barry had always been the kind of man who fixed things himself, the kind who read manuals and asked questions until he understood. He brought that same stubbornness into every consult. He kept a notebook. He learned the names of the medications. He asked, more than once, what would happen if he did nothing, and he listened to the answer. The hardest part, he says now, wasn't the diagnosis. It was admitting he was scared in front of the people he loved. His wife caught him at the kitchen sink one night — gripping the counter, trying to breathe — and instead of letting him pretend, she put her hand over his and waited. That moment, Barry will tell you, did more for his treatment than any pill. Today he coaches his son's team again. He pours coffee at six in the morning and watches the light come up over the backyard. He says he is not the same man he was before, and he doesn't want to be. He is steadier now, and slower in the right ways, and unwilling to let a single Saturday pass without showing up for it.

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