We asked a group of Nystagmus Network supporters what questions they would most like to put to nystagmus researchers. Then we found researchers to answer them.
Your questions were answered by
Question 1: Will there ever be a cure for nystagmus?
Answer: (JS) Nystagmus is the result of a lot of different things going wrong. Traditionally, to try and find a cure for anything you really need to know what that thing is that has gone wrong and quite often it requires very different treatments. It’s a bit like trying to find a cure for stomach ache. You’re never going to find a cure that treats all types of stomach ache. You need to find out what the cause is and then look at lots of different treatments.
There is also the opposite way of looking at it. If nystagmus is the final result, is there something that can be done to stop the eyes from ‘wiggling’. Will that actually help? In some situations and for some people I think it would. For instance, if you’re an adult and you have acquired nystagmus and oscillopsia because your eyes are moving all the time, that is horrendous. So if we could find a cure for that part you might say you don’t then need to know what the underlying cause is.
So there are different ways of looking at it, but I think a single panacea for nystagmus is very unlikely. I don’t think anyone is going to invent a pill which corrects all the underlying causes.
(HL) I would agree with that. It also depends on what you define as a cure. Is it getting rid of the wiggle entirely or is it to deal with some of the side effects of the nystagmus? We will be able to help with a lot of that in time. It’s just a question of dealing with each problem as they come along and dealing with it on an individual basis. Some people may not be bothered by the wiggle but by the visual function. Some people care more about how their eyes look.
But Jay and I remain optimistic that by the end of our careers we will have found some sort of cure for everything that causes nystagmus.
(JS) An added complication is that there are different types of albinism which have their own causes, so one type of treatment might be appropriate for one type of albinism and not for another. The final level of complexity is that things often depend on who you are and where you live. For example, if you live in sub-Saharan Africa the colour of your skin may be the most important thing to you if you have albinism. If you live in Scandinavia or Europe, the colour of your skin may be way down the list and the vision or the nystagmus may be more important to you.
Nystagmus researchers have for a while talked about developing a kind of toolkit which can be added to. For example, for other conditions you have lots of different tools which can be used in different scenarios. That’s the end point we would really like to get to. It’s going to be slow. It will take a long time. There will be advances in some areas, whereas others are falling back a bit. It’s a levelling process. It’s going to take a while.
We will publish more of your questions and the answers Jay and Helena gave over the next few days.
The Nystagmus Network is enormously grateful to Jay and Helena who gave up their time on a sunny Saturday afternoon to answer questions from the nystagmus community so openly and fully.