The Rare Disease That Changed Everything How does it feel to finally get a name for a lifetime of unexplained suffering? 😔 Elizabeth opens up about the long, painful road to diagnosing her rare genetic disorder — and how a critical clue in her mother’s health history held the key. After years of being dismissed or mislabeled, she finally found a doctor who didn’t stop at “normal” test results. Her story reveals the emotional cost of misdiagnosis, the temporary relief of effective treatments, an

1.3K views · 23 reactions | Let’s party and spread awareness this month for Rare Disease Month! #Rarediseasemonth | Rare Patient Voice | Facebook