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In this powerful episode of Rare Connection, Joanna Ball speaks with Saida Mahoney — a beauty queen, author of nine books, athlete, performing artist, and National Rare Disease and Disability Advocate living with Partial Trisomy 8q Duplication Syndrome, an ultra-rare genetic condition.

Saida shares her journey growing up with neurological challenges and multiple types of epilepsy, including focal, grand mal, idiopathic, and absence seizures. Her story is one of resilience, faith, and advocacy — showing the world that rare disease and disability don’t define a person’s worth or strength.

💜 Topics Discussed:

  • Living with Partial Trisomy 8q Duplication Syndrome
  • Navigating life with epilepsy and neurological symptoms
  • The importance of epilepsy awareness in the rare disease and IDD communities
  • Finding identity and purpose through advocacy
  • Using creativity, education, and pageantry to empower others

📚 Saida Mahoney’s eBooks on Wattpad

Explore Saida’s inspiring writing and advocacy through her online books:

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64 episodes