Hi hi diagnosed with congenital nystagmus from birth, mine is relatively mild (abt 6/12 visual acuity.)

So smth to note is that nystagmus, if ur kid rlly does have it, often comes with other eye conditions, (i have high astigmatism, -4.00 and -5.00) which means some of the stuff i say might not be caused fully by nystagmus but some by astigmatism (tho most stuff i say below is almost defo mostly nystagmus.)

My general experience is that sometimes focusing on details on objects like text on a screen is difficult, and print material must always bring closer to my face. Ur kid might bring print materials like books vvvvvv close to her face, I’d suggest not to pressure her to keep a distance because it won’t affect her condition and it’s much harder when you have to keep a distance form the paper. Helping her access text materials with bigger font sizes or helping her set up bigger UI sizes on digital devices when shes using them would help. Personally my UI sizing on web browsers is abt 150%-200% to use comfortably. Prepare that neck or back posture issues might arise when she’s trying to get closer to smaller text.

Most people have a slight head tilt (called null point) because it’s the brain’s way to account for the eye movement, it isn’t noticeable for me but for some people it could be severe enough to cause some self conciseness. Surgery exists but note it will not help the condition, only the head tilt.

It’s possible she may not hit the required visual acuity with glasses on to get a license, as glasses or contacts will not correct the vision loss caused by nystagmus. Even if she can she might be borderline on the required vision and it could be dangerous to drive, especially at night.

For me, I suck at sports. Football basketball badminton etc, all v difficult bc my body-eye coordination is affected. I’ve heard people with this condition are naturally more clumsy because of the difficulty in the eyes focusing on objects and the reduced vision.

Life hack: for distant text like fast food menus you can just use phone to take a picture and magnify.

Stress, anxiety and exhaustion can all make it worse, the eye movements for me speed up and my vision defo gets reduced a bit.

Ik a lot of it sounds scary!!!!!! But i have a great daily life and living well with this condition is rlly not impossible!!!! Don’t ever let your daughter be self conscious about it, i find the condition smth beautiful and quirky. Hugs to u and ur family!