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December 5, 2024 21 mins

“Being a provider yourself doesn't protect you or your loved ones from illnesses and it really brings the humanity back into medicine to recognize that we're all struggling and that the  patient in front of you is processing what they hear in their own way,” says Dr. Marta Perez, and OB-GYN and mother of a child with a rare condition. As Perez shares with host Lindsey Smith, her young daughter’s struggles with Smith-Magenis Syndrome – which causes an array of developmental delays and other challenges -- has made her, and her physician husband, better doctors by sharpening their understanding of the difficulty patients have navigating the healthcare system and dealing with dismissive providers. “That's been something really formative for us in how we approach patients in our own practices. We understand the stresses in medicine.” In this candid interview, Perez talks about how she and her husband juggle two demanding jobs and a child with special needs, the impediments to finding treatments for rare diseases and the emotional impact of realizing your child will not have the kind of life you hoped they would have. Don’t miss an episode rich with lessons for providers and parents as our Year of the Zebra series continues. 

Mentioned in this episode:

@Dr.MartaPerez

Smith Magenis Syndrome

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