Being a caregiver means becoming an expert on your loved one’s disease

There is a moment in rare disease caregiving when you realize something unsettling: The system doesn’t know more than you do. In fact, it often knows far less.

For those caring for someone with hereditary transthyretin amyloidosis (hATTR), that moment doesn’t arrive dramatically. It creeps in through unanswered questions, vague reassurances, the quiet repetition of “We don’t see this very often.” And then, almost without noticing, you cross a line. You stop being just a partner, a daughter, a son, or a friend. You become the expert.