Nystagmus Support Group

Nystagmus is rapid involuntary rhythmic eye movement, with the eyes moving quickly in one direction (quick phase), and then slowly in the other (slow phase). Nystagmus is a relatively common clinical condition, affecting one in every 5,000 to 10,000 individuals. Nystagmus generally causes a degree of vision impairment, although the severity of such impairment varies...

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Ears, Eyes & Mouth
/ Nystagmus Support Group

40 year nightmare

Bornloser
Bornloser

40 years with a severe congenital nystagmus and I wouldn't wish this on my worst enemy, death can't come any sooner, it's got to be the loneliest existance ever, a life with no friends, no buddies to have your back and endless jokes and ridicule


All the optimists can say there's always a brighter tomorrow- that's one thing I'll never have


Umma
Umma
M 22 and have same thoughts...
Still believe in brighter tomorrow...
May be one day there will be a treatment of our condition....
I also have same social problems,cant interact,over consious,too much complexities,zero confidence
The worst point is that no one can even understand what i am facing,ehat issues i am dealing with...
Brokeneck
Brokeneck
Hate to hear that you feel so alone and have suffered endless jokes and ridicule due to your nystagmus. That is just plain horrible of people. I can understand it from children who don't know any better. I suffered the same thing all throughout my early years. As I grew up, though, I learned to take it in stride and would avoid the name callers. I learned that most people who had never seen it before might stare, or even giggle and ask how I did that. I sincerely hope that you find a better class of people who see you for you and not what your eyes are doing. I've had this for 50 years so I know how it goes.
silon72
silon72
hang in there dude i have had it since i was born and i am now 48 and married with two children. but YES i too was also bullied,picked on and mocked as a youth and even the police are judge mental of my situation so i can relate. A lot of times i would smoke or eat marijuana i am not suggesting you to become a pot head but all of my peeps in my circle of cannabis users have told me that it slows the rapid movement in my down almost to a stand still. Although i will never drive a car or obtain a drivers license i have learned to live with it. i am now in a christian support group that is very accepting of me without judgement and supports me in every even emotionally.
Nishi
Nishi
I am in similar situation. Is there a way to have a virtual group or Zoom meeting where people like us can be friends among ourselves. This is my first time here.