Feb 4, 2021

4 min read
A blank journal on a table

Rare Disease

On Writing My Rare Disease Memoir

I have always wanted to write a book. I just never planned to write about my rare disease. It started as a graduate class assignment. During the spring of 2020, I took an elective class called ‘Race in Contemporary America.’ The final assignment was to write our own autoethnography of race. Mine began: “I cannot write my story of race without writing about rare disease. I have been…