The Podcast by KevinMD
The Podcast by KevinMD
She was learning to keep others breathing while losing her own air
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She was learning to keep others breathing while losing her own air

 

What happens when a woman is diagnosed with a rare, estrogen-sensitive lung disease at 28, in her first week of residency, with no roadmap for whether she can safely have children? Anesthesiologist Lyndsay Hoy shares her experience navigating family planning after being diagnosed with lymphangioleiomyomatosis (LAM), a rare disease that predominantly affects women of childbearing age. Her episode is based on her KevinMD article, "Reproductive care for rare diseases: the missing playbook," Even with a medical degree, institutional access, and a physician partner, Hoy found the answers incomplete, and she knows most women facing similar diagnoses have far less support. You will hear why rare disease patients so often become their own case managers, bridging pulmonology, reproductive endocrinology, and genetics with no coordinated system guiding them. Hoy draws on the oncofertility model built around hormone-sensitive breast cancer as proof that structured reproductive counseling can be developed even under uncertainty. She outlines what a minimum viable playbook for rare disease reproductive care should include and the work already underway at the LAM Foundation. If you care about closing the gaps in women's health care, this conversation will change how you see the problem.

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