Category: Hermansky-Pudlak Syndrome

case and cass stand outside on a small red carpet. dressed in long formal dresses, they look at each other while laughing and hold their canes.

July 23, 2024

98. rolling out the red carpet for the albinism conference

Case + Cass recap their time at the albinism conference in California. They talk about sessions they led and spending time with friends.

collage of cass (left) and case (right). young cass holds a bag of blood and gives it a kiss. case sits in a lab to get her blood drawn and wears a mask

Episodes / Hermansky-Pudlak Syndrome

June 25, 2024

96. let’s talk about blood!!!

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Case + Cass talk about their bleeding disorder, how it affects them, and how they manage it. They also share some not-too-gory stories.

Episodes / Hermansky-Pudlak Syndrome

April 16, 2024

91. doctors at a bar, cute lab mice, & dancing dinosaurs: HPS conference recap

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Case + Cass recap the 2024 HPS Conference. They discuss key moments, funny interactions, and overall feelings about this special event.

collage of toddler case (left) and baby cass (right). case, about 3, smiles up shyly and holds up a finger. cass, a baby, sits stoic wearing sunglasses

Episodes / Hermansky-Pudlak Syndrome

August 1, 2023

73. the alternate life where we wouldn’t be friends

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Case + Cass talk through what their lives would be like if they didn’t have Hermansky-Pudlak Syndrome, for better and for worse.

collage of cass (left) and case (right). each woman wears a mask and their eyes shine behind their glasses as they each have their blood drawn in a cluttered lab

Episodes / Hermansky-Pudlak Syndrome

May 9, 2023

68. the NIH has my colon! the research episode

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Cass + Case talk about their experiences participating in medical research in different contexts, including the National Institutes of Health

selfie of case and cass, smiling widely with their heads together

Episodes / Hermansky-Pudlak Syndrome

April 11, 2023

66. HPS conference: reuniting our community after four years

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Case + Cass recap their time at the HPS conference after not meeting as a community since 2019 and all the unique times it involves

two photo collage of casey and cassandra. casey holds her cane as she stands and smiles in front of a log cabin, and cassandra laughs with one leg up on a bench as romana sits beside her

Blindness / Disability / Episodes / Hermansky-Pudlak Syndrome

March 28, 2023

65. feeling like a burden

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Cass + Case talk about times they’ve felt like a burden due to their blindness or chronic illnesses and ways they address those feelings

side by side collage of casey (left) and casssandra (right). casey gets ready for a sleep study and wears various electrodes and medical cables around her head and an oxygen cannula in her nose while giving the camera a goofy grin. cassandra wears a crop top with her ileostomy bag on display (an oval-shaped bag on her lower left abdomen) with a colorful floral cover adorning it. she holds an empty frame to "frame" her ostomy and smiles at the camera

Disability / Episodes / Hermansky-Pudlak Syndrome

March 1, 2022

40. this one’s TMI…

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Cass + Case tell wild, potentially embarrassing stories on their experiences with chronic illness. This one might get TMI with blood, vomit, urine, and poop, so listen at your own risk!

side by side collage of cass and case. cass's back is shown as she points her thumbs down toward the rear of her sweatpants that read "rare end." case uses a monocular and wears a black mask, a floral dress, and a denim jacket

Disability / Episodes / Hermansky-Pudlak Syndrome

March 23, 2021

Cassandra + Casey discuss whether or not they want a cure for their vision and other disabilities. They explore the medical and social models of disability and different factors affecting their worldview.