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Your nystagmus research questions answered – question 2

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

Jay Self (JS), a Consultant Paediatric Ophthalmologist at University of Southampton who has been researching nystagmus for around 15 years since studying nystagmus for his PhD. He runs specialist nystagmus clinics and researches primarily cause and diagnosis and treatment of albinism since around 50% of his nystagmus patients seem to have albinism.
Helena Lee (HL), a Consultant Ophthalmologist at University of Southampton and a nystagmus researcher, currently working on developing a treatment for albinism.

Question 2: Why isn’t there a focus on cure?

(JS) Sometimes people’s focus changes from cure to what we can do right now to help people in education and so on. I think the honest answer is that all of these things need to be addressed, often by very different groups of people. There are some quick wins and some slower ones. It’s a multi-team effort. It doesn’t mean that one team is more important than the other.

For quite a while we have said that diagnosis is more important at the moment, because it’s very easy to test drugs and do clinical trials, but actually you’re never going to get funding for it and it’s not very likely to work unless you have a very good argument as to why it will work and for that you have to have specific groups of patients.

Cure has lagged behind, but we are getting there thanks to Helena’s work on L-Dopa. And there are a few other things. But if there’s one thing we should focus on, for me it’s getting to the bottom of what’s causing it.

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.

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