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I’m thrilled to share that #MadameNoire has published a #necrotizingenterocolitis piece I worked on in collaboration with the #NationalBirthEquityCollaboration’s Susan Perez & Afua Nyame-Mireku!

The article discusses surviving #necrotizing enterocolitis, understanding my mom’s experience with the healthcare system as I began to navigate it myself as a #Black female #raredisease patient, and NEC’s disproportionate impact on Black infants.

#blackmastodon #equity #health

https://madamenoire.com/1327729/nec-neonatal-illness/

Hello! After jumping the Titanic, I thought I’d introduce myself here: I’m Linseigh, a rare disease activist, actor, singer, & storyteller. Originally from GA, I used to live in NY and Cambridge and now live in London, where I try to convince locals that US biscuits aren’t scones.

I mainly talk about: #writing #raredisease #necrotizingenterocolitis #politics #immersive #performance #disability #xr #random etc.

This #news feature summarizes me pretty well: https://www.fox5atlanta.com/news/georgia-grad-student-defies-medical-expectations-25-years-after-devastating-diagnosis