Nystagmus in lockdown


In this Guest Post, Neil writes about his experiences of lockdown as a visually impaired person. I’m registered partially sighted and diagnosed with nystagmus and ocular albinism from birth. Both conditions will never improve, but fortunately will never get worse either, so I’m told. Basically, I’m extremely short sighted and on a good day (with … Continue reading Nystagmus in lockdown

Does nystagmus or ocular albinism affect my immunity?


Lots of you are asking us this question and some of you have received notification letters from the government. We asked for expert clinical advice and received the following statement: “IN (infantile nystagmus) or OA (ocular albinism) in isolation are not associated with compromised immunity. “There are some syndromic forms of albinism that are associated … Continue reading Does nystagmus or ocular albinism affect my immunity?

Research into albinism could be good news for babies born with nystagmus


Dr Helena Lee from the University of Southampton was happy to announce this week the publication of a first paper from the OLIVIA study which shows the potential for L-DOPA treatment to improve the vision in albinism. This means that the sight of newborn babies with ocular albinism could potentially continue to develop and improve … Continue reading Research into albinism could be good news for babies born with nystagmus

Roselle is coming to Open Day


Because there is such a close link between albinism and nystagmus, the Nystagmus Network works closely with Albinism Fellowship UK. Chair of AFUK, Roselle Potts, will be joining us this year at Open Day to speak with researchers, to find out more about our education advocacy service and chat with families affected by ocular or oculocutaneous … Continue reading Roselle is coming to Open Day

Does albinism protect against AMD?


We are seeking potential research candidates on behalf of researchers in Southampton (Jay Self and Helena Lee) who must be over the age of 60 and have any form of albinism. Thank you to those who have already responded. We have already found 12 people, but we really need 20 for a viable study. If … Continue reading Does albinism protect against AMD?

Celebrating National Sunglasses Day!


As photophobia is a frequent accompaniment to nystagmus and ocular albinism, we’re happy to join in a day of celebrating sunglasses and raising awareness of the importance of protecting your eyes, whether you have nystagmus or not, from damaging UV rays. We’re enjoying some beautiful, warm sunny weather across the whole of the UK right … Continue reading Celebrating National Sunglasses Day!