Since the very first Nystagmus Awareness Day we’ve been collecting your nystagmus stories to share. Whether you’ve achieved something great or small, despite or maybe even because of your nystagmus, we want to hear from you. Your stories raise awareness of nystagmus and bring hope to parents of newly diagnosed children. Help them know how bright the future can be. Share your story with us at info@nystagmusnet.org Thank you!
Through my work and studies, I have shown that a disability like nystagmus does not define what a person can achieve.
Ivy has scrunched her face up for as long as we can remember when in brighter environments.
We have two beautiful girls called Ella (age 6) and Lola (age 2). They both have Oculocutaneous Albinism and Nystagmus.
When I was born, my vision was unique due to me having latent nystagmus, a condition that causes involuntary eye movements in my left eye when my right is covered.
In October 2023 I went to a functional neurologist as a last ditch effort after two years of seeing a variety of doctors to help with my severe anxiety, depression, and high heart rate (resting was over 120 bpm).Â
My nystagmus story starts with being in school and struggling so hard to read everything off the chalkboard. I would become so frustrated as everyone else could see and I was struggling.
