As I sat there in our living room with tears running down my cheeks, I asked my mom, when I was 15-years-old, “Why aren’t the doctors looking for a cure? I want to be able to drive.” My mom did not know the answer about any treatment plans.
Now at age 30, I still do not have my driver’s license, however I know that my future is a lot brighter. I have a bachelor’s of Arts degree and 53 continuing education certificates. I have different pieces of technology that help me achieve success every day.
However, many people still do not know what Nystagmus is. That’s why 20th of June is celebrated as Nystagmus Awareness Day. This year’s theme is: Nystagmus in the open. This year’s theme is to get the general public to become aware of the condition and to get more people who have it talking.
Nystagmus is an eye condition where the eyes move continuously in either in a vertical, horizontal, or circular pattern even though sometimes there can be any mix in the patterns. There are two main types of Nystagmus. The first one is called Congenital Nystagmus, or in recent years renamed Infantile Nystagmus (IN) or rarely Early Onset Nystagmus. People who have Congenital Nystagmus are born with the condition and sometimes there is no known cause as to why someone has it.
The second type of Nystagmus is called Acquired Nystagmus. This impacts people later in life and sometimes has a cause; such as impact of medicine, a head injury, or having vertigo. Both of these kinds of Nystagmus impact people’s vision, which can range from being legally blind to having low vision. It impacts people differently.
Right now, there is no cure for Nystagmus, however I know that the Nystagmus Network is working with scientists, medical doctors and other professionals to improve our quality of life, and hopefully one day have a cure.
The Nystagmus Network does more than research, they also provide peer-to-peer support, family support, and different treatments. However, this can not be done without the help of the public. Please consider making a donation.
For more information about Nystagmus please visit: Nystagmus Network’s home page
To read more about how people with Nystagmus are amazing please consider subscribing to their newsletter, Focus.
4 thoughts on “Nystagmus Awareness Day 2018: Nystagmus in the open”
Very nice summary. I still prefer the term “Congenital Nystagmus’ over “Infantile Nystagmus Syndrome, INS” Regardless of the term used, they both describe an all too common and greatly overlooked condition. Thanks for your post, Amanda.
Thank you, Jeff for commenting. I hope you have a wonderful day.
An excellent account, Amanda. You are a fabulous nystagmus ambassador. Happy Nystagmus Awareness Day 2018 from everyone at Nystagmus Network UK.
Awe, thank you. Happy Nystagmus Awareness Day 2018.