Podcast: Michelle and Karina Optic Nerve Glioma Story

Michelle’s Diagnosis Journey:

– Michelle noticed symptoms in December 2021.
– Initially, doctors brushed off her symptoms.
– She had colour loss and extreme blurriness in her left eye.
– Got a second opinion in April 2022 and was diagnosed with an optic nerve glioma.
– Doctors decided to monitor it initially due to slow growth.

Karina’s Diagnosis Journey:

– Karina experienced blurry vision in October 2021.
I initially thought it was an eye infection.
– An optometrist recommended seeing a neuro-optometrist.
– After waiting for hours in the ER, she was diagnosed with an optic nerve glioma.
– Karina underwent a biopsy that worsened her vision.

Treatment Decisions:

– Michelle and Karina had various treatment options, including radiation, immunotherapy, chemo, and surgery.
– They sought multiple opinions to make informed decisions.
– Michelle opted for proton beam radiation, while Karina chose targeted immunotherapy.
– Both have experienced challenges and side effects during their treatment journeys.

Impact of Diagnosis on Age:

– Michelle was diagnosed at 26 years old.
– Karina was diagnosed at 24 years old.
– They discussed their similar experiences at a young age.

Support and Meeting Each Other:

– Michelle and Karina met on TikTok after finding out they both had optic nerve gliomas.
– They supported each other throughout their journeys.
– Shared anecdotes about funny experiences related to their vision loss.

Creating the ONG Awareness Page:

– Michelle and Karina’s shared experiences inspired them to create the ONG Awareness page.
– They hope to connect with others who have similar diagnoses and provide support.
– Encouraging people to share their stories and raise awareness.

Positive Mindset and Faith:

– Michelle and Karina emphasized the importance of maintaining a positive mindset.
– Believing in something greater and finding strength in faith.
– Coping with challenges through humour and laughter.



Find :  @ONGAwareness on Instagram


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A post shared by Claire Bullimore (@braintumoraunty)

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