The Loneliness of Living with Von Hippel-Lindau Syndrome

Patient Stories with Grey Genetics

As a junior in high school, Mikaela played varsity softball. When her performance started to decline and she wasn’t feeling well, she was initially told she likely had an ear infection. The second doctor she saw ordered a brain MRI to rule out a possible brain tumor. The third doctor she saw ordered a full body scan to rule out the possibility of additional tumors. Within a few weeks, she’d had multiple surgeries to remove tumors in her brain, neck, and spine and had a diagnosis of Von Hippel-Lindau syndrome. Mikaela shares how her diagnosis, multiple surgeries, and resulting chronic pain and nerve damage have impacted her life, first as a teenager and now as a young adult and how she is learning to balance living with a rare disease without letting it limit her.

Links and Resources

VHL Alliance

Aware of Angels

Miracle’s for Mickey (Mikaela's Blog)

Follow Mikaela on Instagram: @MikaelaGage7

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