Teen's mystery illness solved: "It took 18 years to get an answer"
After 18 years of searching for answers, Lucia Adarve was finally diagnosed with Jordan syndrome, a rare neurodevelopmental disorder. Her journey involved numerous misdiagnoses and a lack of effective treatments, leading to significant challenges in her daily life. The diagnosis came after a visit to a specialized clinic that utilized advanced genetic testing.
- ▪Lucia Adarve struggled with various symptoms since birth, including seizures and communication difficulties.
- ▪Despite numerous diagnoses, none aligned with her symptoms until she was tested for a rare genetic condition.
- ▪The diagnosis of Jordan syndrome was confirmed through genetic testing at the Cleveland Clinic's Undiagnosed Disease Clinic.
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HealthWatch Teen's mystery illness diagnosed after a lifetime of symptoms: "It took 18 years to get an answer" .chip { background-image: url('/fly/bundles/cbsnewscore/images/chip-bgd/chip-bgd-healthwatch.jpg'); } By Kerry Breen Kerry Breen News Editor Kerry Breen is a news editor at CBSNews.com. A graduate of New York University's Arthur L. Carter School of Journalism, she previously worked at NBC News' TODAY Digital. She covers current events, breaking news and issues including substance use. Read Full Bio Kerry Breen May 23, 2026 / 8:00 AM EDT / CBS News Add CBS News on Google At 18, Lucia Adarve had been to more doctors than most people see in a lifetime.
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