International Nystagmus Awareness Day
International Nystagmus Awareness Day (June 20) serves as a day of advocacy, dedicated to increasing general knowledge on nystagmus, which affects millions of people globally and has no permanent cure.
Nystagmus is the unintentional movement of the eyes. There are two main ways nystagmus can occur: congenital/infantile nystagmus and acquired nystagmus. Congenital and infantile nystagmus are associated with conditions like Down Syndrome and albinism. Acquired nystagmus can be caused by neurological issues like stroke, multiple sclerosis, or even head injuries.[i] Nystagmus can also be caused by the consumption of certain medications and alcohol.[ii]
There are two main kinds of nystagmus: pendular nystagmus and jerk nystagmus. Jerk nystagmus is characterized by slow movement of eyes towards one direction and then alternating rapid movement of the eyes in another. Pendular nystagmus involves the eyes moving in sinusoidal oscillation without any swift phases.[iii]
Surgery is the most common treatment for nystagmus currently. The use of magnetic implants also emerged in 2017. Some medication has also been used to help people manage some forms of nystagmus.
The Nystagmus Network (U.K., founded in 1984) is responsible for establishing International Nystagmus Awareness Day, commemorated for the first time ever on June 20, 2020.
Raising awareness of nystagmus is important as it could lead to an increase of funding put towards research projects that are aimed at finding more treatments for the issue. Increasing societal consciousness of nystagmus can encourage doctors to do more research on the condition, making it easier for them to diagnose it early on. Moreover, International Nystagmus Day provides people with nystagmus the platform to share their experiences and find community with people who share their condition.
What can you do to support International Nystagmus Awareness Day?
Join and donate to any groups or organizations in your community that provide resources to people with nystagmus. You can also organise fundraisers that can support people with nystagmus. You can also create a network that allows people with nystagmus to connect with each other or promote any existing networks on any platform you have. Any kind of support you can offer will go a long way to improve accessibility for people with nystagmus.
There is currently a Canada Nystagmus Network Facebook group for people with nystagmus and their families. It is centred on the exchange of information about nystagmus, as well as raising awareness on the issue. Click here to check it out.
Support the Nystagmus Network and learn more about nystagmus here: https://nystagmusnetwork.org/
Read more about International Nystagmus Day here: https://nationaltoday.com/international-nystagmus-day/
[i] “What Is Nystagmus?” Nystagmus Network, https://nystagmusnetwork.org/information/nystagmus/.
[ii] Nystagmus: Causes, Symptoms, Treatments | Healthing.Ca, https://www.healthing.ca/diseases-and-conditions/nystagmus.
[iii] “C. Disorders of Eye Movements.” Canadian Neuroophthalmology Group, https://www.neuroophthalmology.ca/textbook/disorders-of-eye-movements/x-nystagmus.
