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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Record
| Original publisher | CBS News — Top |
| Canonical URL | https://www.cbsnews.com/news/jordan-syndrome-ultra-rare-disease-cleveland-clinic-mystery/ |
| Publication time | Sat, 23 May 2026 08:00:00 -0400 |
| Retrieval time | 2026-05-23T12:07:26.436Z |
| Last seen | 2026-05-23T12:07:26.436Z |
| Headline source | Publisher (no WeSearch rewrite) |
| Excerpt source | publisher body |
| Excerpt method | First ~120 words (~800 chars) of extracted publisher body, fair-use limited. |
| Summary | WeSearch · cerebras-chat (WeSearch summarizer) |
| Summary source text | contentText |
| Citation coverage | Summary is a WeSearch-generated derivative; primary citation is the original publisher URL. |
| Cluster | Ci8Og62oCGiL |
| Cluster logic | Grouped by semantic title/content similarity across sources within a rolling window. Same-publisher template collisions are excluded from coverage comparison. |
| Ranking reason | Story pages are not engagement-ranked. Hub feeds use recency, with optional source-diversified chronological ordering (cap consecutive stories per source). No personalized ranking. |
| Publisher visit | Yes — open original |
| Substitutes article? | No — link-out required for full text |
Rights status (four layers)
WeSearch handling by dimension
| Indexing | May the item be indexed (stored, ranked, made findable)? | Allowed |
| Snippet | May a short excerpt of the publisher's text be shown? | Allowed |
| AI summary | May WeSearch generate its own short summary of the article? | Limited |
| Retrieval / RAG | May the content be exposed for third-party retrieval-augmented generation? | Not asserted |
| Model training | May the content be used to train AI models? | Not asserted |
| Commercial reuse | May the content be reused commercially? | Not permitted |
Basis: Derived from the published RSS/Atom feed. Contact: [email protected]. Reviewed: 2026-07-24.
Opening excerpt (first ~120 words) tap to expand
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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Excerpt limited to ~120 words for fair-use compliance. The full article is at CBS News — Top.
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