My Quest to Cure Prion Disease — Before It’s Too Late | Sonia Vallabh | TED

TED2 minutes read

A woman shares her journey of discovering and studying genetic prion disease after finding out she carries the mutation with a 50-50 risk of inheriting it, emphasizing the importance of prevention and the challenges of developing a therapy for the brain. Despite the fatal nature of the disease, she and her husband are working on developing a therapy to target the rogue protein to prevent the disease, reflecting on the impact of the illness on her family and the hope for the future through their work and children.

Insights

  • Genetic prion disease, a fatal condition caused by a rogue protein spreading in the brain, led the speaker to pursue research and therapy development to prevent the disease.
  • Despite facing a 50-50 risk of inheriting the disease-causing DNA typo, the speaker and her husband chose to undergo testing, leading them on a journey of education and career change to combat prion disease through therapy development emphasizing prevention over treatment.

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Recent questions

  • What is prion disease?

    A fatal brain disorder caused by rogue proteins.

  • How does prion disease affect the brain?

    Kills neurons by spreading rogue proteins.

  • Can prion disease be inherited?

    Yes, through genetic mutations.

  • What are the challenges of developing a therapy for prion disease?

    Targeting the brain and preventing progression.

  • How does prion disease impact families?

    Causes emotional distress and genetic risk.

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Summary

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"Facing Genetic Prion Disease: A Journey"

  • The speaker received a letter 13 years ago that led to a pivotal moment in her life.
  • She recounts two significant moments from her past, including her wedding and her mother's illness.
  • Her mother's sudden decline and subsequent death were due to genetic prion disease.
  • The speaker discovered she has a 50-50 risk of inheriting the disease-causing DNA typo.
  • Despite the fatal nature of the disease, she and her husband chose to pursue testing and found she carries the mutation.
  • They embarked on a journey of education and career change to study prion disease and develop a therapy.
  • Prion disease is caused by a normal protein going rogue and spreading through the brain, killing neurons.
  • The speaker and her team are working on developing a therapy to prevent the disease by targeting the rogue protein.
  • They emphasize the importance of prevention over treatment and the challenges of developing a drug for the brain.
  • The speaker reflects on her life, the impact of the disease on her family, and the hope for the future through her work and her children.
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