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Teen's mystery illness solved: "It took 18 years to get an answer"

Teen's mystery illness solved: "It took 18 years to get an answer"

Summary

Lucia Adarve spent 18 years with many health problems and unclear diagnoses. Doctors at a special clinic used advanced genetic testing to find she has a rare condition called Jordan syndrome, which affects brain development and movement.

Key Facts

  • Lucia had seizures, balance problems, and sensitivity to sounds and lights since birth.
  • She was diagnosed with multiple conditions but none fully matched her symptoms.
  • Her mother homeschooled her and tried different therapies to help her development.
  • In 2025, neurologist Dr. Todd Arthur listened carefully and referred her to the Undiagnosed Disease Clinic.
  • The clinic uses whole genome sequencing to study all of a person’s DNA to find rare diseases.
  • Lucia’s gene test showed a mutation in PPP2R5D, causing Jordan syndrome.
  • Jordan syndrome is very rare, with fewer than 500 known cases worldwide.
  • The condition can cause developmental delays, large head size, and movement difficulties.
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