Podcast: Joss Dysembryoplastic Neuroepithelial Story

In this episode, we sit down with Joss, who shares her inspiring journey of triumph over epilepsy and a Dysembryoplastic Neuroepithelial tumour. From the initial onset of seizures to the path of recovery, Joss’s story is a testament to the resilience and the power of medical advancements.

Joss’s Triumph: Epilepsy And Dysembryoplastic Neuroepithelia Tumour

Episode Highlights:

  • Joss’s Seizure Beginnings: At the age of 16, Joss’s life took an unexpected turn when she started experiencing seizures. Initially attributing them to déjà vu, she ignored the signs until she escalated.
  • Frightening Tennis Court Incident: While on vacation, a sudden incident on a tennis court involving running backwards with no recollection afterwards shocked Joss’s family and marked a pivotal moment.
  • The Diagnosis: Following the vacation, Joss’s family insisted on a medical evaluation, leading to MRI scans that revealed a tumour in her right temporal lobe, causing epilepsy.
  • Medication Challenges: Joss navigated three years of trying various medications to manage seizures. Some worsened her condition, leading to up to 15 seizures per week.
  • Surgical Solution: With medications providing limited relief, Joss’s medical team recommended surgery. In 2011, she underwent two operations at the National Hospital, marking a turning point in her journey.
  • Advances in Neuroimaging: Joss benefited from the advanced Neuroimaging Suite during her surgeries, ensuring precision and thoroughness in removing the tumour.
  • Post-Surgery Challenges: Joss shares the experience of swelling and recovery post-surgery, highlighting the complexities of the journey towards seizure freedom.
  • Life After Recovery: Since her operations, Joss has been seizure-free and has embraced life’s adventures, including bungee jumping, skydiving, and deep-sea diving.
  • Encouragement for Others: Joss’s advice to not let limitations hold you back resonates as she emphasizes the importance of communication with medical professionals while pursuing dreams.

Conclusion: Embark on an inspiring journey with Joss as she triumphs over epilepsy and a Dysembryoplastic tumour. Overcoming seizure challenges, her resilient recovery shines through against all odds.

You can find the interview also on YouTube if you prefer.



Joss went on to write a book called My Adventure Journal

If you plan an adventure with young people away from their usual homes and routines, this guide will help the whole family feel prepared. Whether you are off for a day trip, long weekend or school holiday, this adventure journal will guide young people through what’s to come. And proving an ideal space for journaling and scrapbooking. Find out more here…. 

Related Post:

My Astrocytoma Was Found After Having Seizures

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