Nystagmus

[BlondieR22]

Hi All,

does anyone know the likely hood of having albinism without nystagmus? My ds is currently under going testing for albinism as he is very blonde with pale retina.

although he does not have nystagmus or any obvious vision issues.

thanks

How old is your baby? I thought the nystagmus was normally present from birth or developed within the first 3 months with albinism. I am not an expert in this particular ocular field though so hopefully someone more knowledgeable will come along

Hi @Sheepreallylikerichteabiscuits Hes 6 months, yes from what I have read it comes on quite early so I’m assuming he will not have nystagmus either way.

My son has ocular albinism, and had nystagmus pretty much as soon as his eyes focused. That was the sign, really, as although he is very blond, he doesn’t present physically as having albinism.

@ShirleyJackson it seems nystagmus is so common with albinism. The doctors aren’t really doing much unless more symptoms present themselves such as the above. However he does have a slight lazy eye now and then which is getting checked out again at the end of the month. One eye points outwards but only when looking far away or ill for example. Oh and he’s sensitive to the sunlight! But not to indoor lighting. It’s frustrating waiting and not knowing as I want to make sure I’m doing all the right things to protect him!

Try not to worry too much (easier said than done, I know).

It sounds like you’re doing all the right things in getting him checked out.