International Nystagmus Awareness Day (2019)

Nystagmus is a medical condition that many people haven’t heard of before. Nystagmus is an eye condition where the eyes move in a vertical, horizontal and sometimes circular pattern. There is no cure and it can impact someone’s life in many different ways.  I was born with Nystagmus. I am not alone. I have met many people who have Nystagmus.

Over the past year I have learned one very important lesson. Nystagmus can be challenging, but I can live a full life despite having it.

Some of the challenges I have had are bullying.  I can not drive. But I have learned there are other modes of public transportation that I can use to be successful. I use accessible technology to access the computer, printed materials, etc.

Nystagmus has made me more positive. It has given me the motivation to do well with my education. I received my regular rather than my special education diploma. I received it with honors too. In college I earned my degree in journalism. I feel passionate about helping parents, children and the general public better understand Nystagmus. That is why I decided to start my own business to help others learn about Nystagmus and how to live a full life despite this. I post information related to Nystagmus on my blog, Facebook page, and YouTube channel.

The public can also support the Nystagmus Network. This charity helps people with Nystagmus. They are also working with different networks to better improve the quality of life and we hope one day a cure.

 

Published by Amanda Gene

Hi, welcome to my website. My name is Amanda Gene. I am a disability and mental health freelancer. I would love to work with your company and I provide writing on a variety of topics on disability and mental health. Feel free to contact me via email at: Amanda@amandagene.com

21 thoughts on “International Nystagmus Awareness Day (2019)

  1. I’ve never heard of this condition but I’m glad that you’re not letting it get in the way of your aspirations!

  2. You’re right, I had never heard of this before. Your determination not to let this condition rule your life is really inspiring. I think everyone can learn from your strength.

    1. Thank you. I am so happy that you learned about it. Please pass the video on to others. The more people who know about it the better our Nystagmus community can be. #BeAFriend #Advocate

  3. Nystagmus was honestly something I never knew about. Thank you for sharing. I’m glad it didn’t discourage you but rather encouraged you to do more and be an advocate for it.

  4. Thank you for sharing this – I had never heard of this condition specifically. I hate that bullying is still so prevalent in our society, but talking openly about conditions like this will help to educate the general public and hopefully erode the stigma that so many carry.

  5. Thank you for sharing this! I was recently diagnosed with Nystagmas in both eyes! The diagnosing specialist didn’t even mention that I had this or recommend anything, to correct or improve it! I found out by reading his notes from my visit! I just assumed it was some kind of age-related eye disorder! I’m still not really sure exactly what it is but I will definitely be doing some research on it, after reading your post! Thanks again!

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