Kassandra Shore writes about Ehlers-Danlos Syndrome, a group of disorders that produce defects in the body's connective tissues, at @just.my.genes (4,700 followers). She said she started her Instagram page as a way to update friends and family on her condition last July after a major surgery. Well-meaning relatives couldn’t understand why she would seem fine at a party but need to go to the hospital so often. The fear of publicizing such an intimate journey kept her from opening the account to the public for months. When she did, fellow EDS patients started messaging her, and her following grew.
Shore posted a
collage of her most-liked photos from 2019 in late December. All but one showed her in a hospital—standing beside an IV pole, in a hospital bed intubated after surgery, or close to the camera with half a dozen tubes curving into her chest.
“This is so fascinating to me bc all but one picture is of me at my worst possible health. This year has kicked my butt so much and I don’t share everything,” she captioned the display. She went on to give details about the difficulties the last year had posed, particularly an open heart surgery.
Dozens of commenters poured forth with support and their own experiences. “❤

i had the hardest in every way year whit [sic] my daughter who has cf [cystic fibrosis],” one wrote. Another: “Here’s to a better 2020. You are an inspiration to me in how you have handled everything.”