Nystagmus Awareness Day (2020)
Today is Nystagmus Awareness Day! Nystagmus is the eye condition that I was born with. If you have not heard of the condition know that it is a rare condition that affects, according to Nystagmus Network “1 in 1000 people have Nystagmus.” Nystagmus is an eye condition where the eye constantly moves. This pattern can be in an a vertical, Horizontal, or circular fashion. For me, I have circular Nystagmus. According to the Nystagmus Network, there are two main types of Nystagmus. The first one is called Infantile Nystagmus or congenital. This is the type of Nystagmus I have. That means a person is born with it. The second type is called Acquired Nystagmus. This can affect people later in life and can have different causes or sometimes no known cause at all. Nystagmus can effect’s everyone’s life differently. It all depends on the type of Nystagmus and the severity of it.
As a young girl I had to use large print books to be able to read my schoolwork. I had a teacher of the visually impaired come in a few times a week to provide one on one support. As I got older, I found out I would never be able to drive. My large print books have been replaced by assistive technology. As a young teenager the adults around me did not know what the future had in store for me. I felt sad and I thought I had a bleak future. I thought that I was the only one who had Nystagmus. I had not met anyone else who had the condition. I had so many questions about my future. I had low confidence. I also had a lack of peace because I did not know that there was support out there.
In 2011, I was searching through Facebook and I found the Nystagmus Network. I found out that I was not the only one who had this condition and I was not the only one who felt overwhelmed. I began to ask questions about how I could better live with Nystagmus. Now I have lots of friends, from all over the world, and I have a place where I can ask for advice and support.
I have hope too. I know that the Nystagmus Network and other medical professionals are working on finding better treatment and hopefully a cure one day.
Because of the support I have received I no longer feel like Nystagmus is a roadblock in my life. I feel at peace with the fact that I have this condition. I have learned that everyone who has Nystagmus has talents and that even though you may need to modify your career goal you can live out an amazing life. I am now working on building my career as a freelance journalist and an advocate for those who have Nystagmus.
The support I can get daily cannot be given without the help from the public.
Be sure to visit the Nystagmus Network’s site to learn more about Nystagmus and donate today.
Also, be sure to share this post to help spread awareness on this International and National Nystagmus Awareness Day. 😊
Please note: This post was not sponsored in anyway. I just love the Charity Nystagmus Network. 🙂