Not all sight loss is obvious
Imagine waking up in the morning and dreading opening your eyes.
As soon as you do, you know what will happen. The world and everything in it will be jumping around. Don’t even try to focus on the time. The numbers will be blurry, all jumbled up and shaking.
You wait for things to settle. Only they never do, not completely. This is your life now, your Groundhog Day, since you acquired nystagmus.
Following that first perplexing conversation with your GP, you’ve done the rounds of all the hospital departments, from neurology, through ENT to Ophthalmology and back again.
No one can tell you where it came from. There is no treatment, they say, but it probably won’t get any worse.
Could it be any worse? You’ve already had to give up driving, work, shopping, going to the pub with your mates and you now live with nausea, dizziness and fatigue.
There is one place you can go, though, where you’re sure of understanding and a warm welcome.
The Nystagmus Network brings people like you together on Zoom every month. It might be a rare condition, but you’re not on your own. For an hour a month you feel (almost) normal again. It’s the best care plan you have while you wait for medical research to come up with the answers.
The Nystagmus Network will make that happen. We’ve been here for 40 years already and we won’t stop until everyone knows what acquired nystagmus is and the condition gets proper medical attention.