Our guests are Karina Smith and Michelle Culbert, from South Florida, who both have Optic Nerve Glioma, a rare eye condition affecting sight that typically affects young children. It is a slow-growing brain tumour in or around the optic nerve, which connects the eye to the brain. As the tumour progresses, it presses on the optic nerve.
Karina and Michelle believe they are the only two adults in Florida with this rare eye condition. Sadly, there is very little knowledge, advice, and guidance on how to treat optic nerve glioma in adults.
They both explain how what the sudden onset of sight loss was like for each of them, physically and emotionally and the steps that they had to take to weather the mental health impact it took. We also hear about the treatment they have both had, which includes proton beam radiation therapy.
Together, they are reaching out globally to other people with rare eye conditions to create a support community where people can share their experiences.
If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.
For support
- ONG.Awareness Instagram
- Contact: [email protected]
Download the full transcript here.
Hosted by Chantal Boyle and Lynn Smith, Hidden Disabilities Sunflower.
