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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Claire Bullimore is an influential figure in the brain tumour community. She embarked on her brain tumour journey and was diagnosed with an intraventricular meningioma. In response to her experiences, Claire founded ‘Aunty M Brain Tumours,’ a platform dedicated to sharing brain tumour stories. Based in London, England, Claire also identifies as a blogger and speaker for Aunty M Brain Tumours, shedding light on the challenges faced by those diagnosed and amplifying their voices for better awareness and support. Through her dedication and advocacy, Claire’s efforts have been recognized by Brain Tumour Research and other organizations, spotlighting her commitment to making a positive difference for individuals impacted by brain tumours.
