Hey, Check This Out!

PostedJuly 26, 2021 · 2 minute read

Content curated with the rare disease community in mind.

By AllStripes

A man with headphones on peers into his phone, intrigued.
Photo by SCREEN POST

Have a link to share? We’d love to see it. Contact us on Twitter or Instagram and let us know what you’re reading, listening to and watching.

‘Once you find out, you can’t not find out’

More than 15 years ago, a woman in New York named Katharine Moser decided to get tested for the gene variant that causes Huntington’s disease, which runs in her mother’s family. If she tested positive, she knew she could expect to experience symptoms — including movement, cognitive and psychiatric symptoms — by middle age. The New York Times original 2007 story is incredibly thought-provoking and moving, as is this 2021 follow-up.

The beginner’s guide to parenting a child with a rare disease

As Once Upon a Gene podcast host Effie Parks says in the opening, “this episode is a real and raw conversation between two rare parents.” Tune in to hear Parks and guest Daniel DeFabio, a rare father, discuss ways to cope, hope and find community after a life-changing diagnosis.

What it truly means to be a parent

After writer Julie Kim’s daughter was diagnosed with a rare syndrome, she struggled with how to grieve — and what, exactly, she was grieving. This 2019 Atlantic story is a powerful, gorgeously written, and thoughtfully considered. “Without crumbly, unreliable hope, what else is there?” she asks. “There’s my child, no less alive or human than any other, and with abilities and inabilities much different than I imagined. And realism, which I’ll use to reassemble a positive, long-term picture of what her life could be.”


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