PostedJuly 19, 2021 · 2 minute read
Content curated with the rare disease community in mind.
Some rare disease patients may have organ transplants as part of their care, which can be life-changing — and come with extra challenges during a pandemic. “This is a could-have-been-far-worse story about how the pandemic did not fuel a catastrophe in transplantation or worsen the persistent gap between people who need organs and the donations that supply them,” writes STAT’s Elizabeth Cooney, who explains how and why organ donations from both deceased and living donors remained steady in 2020.
Taylor Harris, whose book This Boy We Made: A Memoir of Motherhood, Genetics, and Facing the Unknown comes out in January, wrote a column called “What Genes Can’t Tell Us” in 2017 and 2018. Her observations about parenting her son Toph are the piercing, lasting kind. Anyone who has to move through the world and relate to people — that is, anyone at all — is bound to be moved by her words.
Author Marie Mutsuki Mockett’s writes a searing, gorgeous essay about her mother’s death from complications of COVID, as well as her decades-long experience as her mother’s caretaker. “From childhood, I learned to sense a reciprocal tightness in my chest when she was struggling for air,” she remembers. “I learned to track her inhaler so I could locate it quickly to help her breathe again, and so I could relax too. It was not just the inhaler. I learned to buy sweaters with zippers, not buttons. Pull-on pants. I could find her a seat on the subway. I found the table in the café in Paris least exposed to cigarette smoke. I learned to track it all so she — so we — would be more comfortable.”