What It’s Like to Test Positive for a Rare Disease and No One Understands How You Feel

woman with her head down

Written by Erin Paterson

December 23, 2019

I was out for coffee with a girlfriend one afternoon, shortly after I was diagnosed as gene positive for Huntington’s disease (HD). We were sitting in large brown leather chairs next to an electric fire place, our coffees on a small table between us. “I am worried about getting sick and becoming a burden to my family. What if my husband leaves me?” I told her with a quiver in my voice. It was hard for me to…

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