195: Ali’s Story | An Invisible Disability, Living in Survival Mode + Giving Up Her Dream Career — The Rare Life

What happens when your child’s rare disease doesn’t look “serious enough” to the outside world?

For Ali Platt, the invisibility of her daughter’s Eosinophilic Esophagitis (EoE) meant battles with doctors, endless appeals to Medicaid, and colleagues who refused understand as Ali spent months and years trying to prove that her daughter’s suffering is real.

In this episode, Ali shares it all: how caregiving collided with her career in law enforcement, the isolation she’s felt without a local support network, the constant state of survival mode, the grief of not being able to stop her daughter’s pain, and what it’s like to advocate for your child when their disabilities aren’t as visible to the general public.

If you’ve ever felt unseen, doubted, or forced to do the impossible just to keep your child safe, this episode will hit home.

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