Resources

Here are some great websites/organizations that educate about and support people with nystagmus:

Pathalogic Nystagmus

This Wikipedia article is a great general overview. It also goes into much greater detail than I about the diseases that are often associated with/accompanied by nystagmus.

The Nystagmus Network
A national, self help organization based in the UK established in 1984 to:
Raise awareness of Nystagmus
Provide information and support to people with nystagmus
Promote research into nystagmus

The American Nystagmus Network
A nonprofit organization founded in 1999 to serve the needs and interests of those affected by nystagmus. It is an outgrowth of the Nystagmus E-Mail List introduced on the Internet two years earlier to provide information on a wide variety of topics pertaining to nystagmus.

www.nystagmus.co.uk
This is a great website by a fellow shifty-eyed friend named James. He is a young man living with nystagmus in the UK. Like me, he shares some of his personal experiences with nystagmus. He also hosts a forum where shifty-eyed people and their loved ones can interact, ask questions, and just get some support. It’s also a great place to find more about research and recent studies.

Nystagmus Blog
This is a wonderful blog about parenting a child with nystagmus. It’s made in a similar fashion to this blog, but from a parent’s perspective.

This list will probably grow with time. If you have any great resources out there, let me know!

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10 thoughts on “Resources

  1. Pingback: Welcome to the Shifty Eyes blog! « The Shifty Eyes Blog

    • Wow I never even knew they had a website like this lol I was just bored an started web surfin. Its kinda cool knowing theres a support group for nystagmus. I wish I knew how to post something on here bc I feel as if I have an amazing story to tell. I do have congenital nystagmus with all the horizontal eye twitches an head movements and yes it affects me physically an mentally but Ive somehow fought through it. I was always teased as a kid an still recieve it today at times but this has never stopped me from making many friends, having best friends, or even having many great girlfriends who were all btw absolutely gorgeous lol[ Im very picky for some reason]. Anyways Im 18 years old.I played football in high school where i recieved many scholarships but I was just a normal sized player with a little bit of talent nothin special I was actually undersized for my position which was quarterback an linebacker. It was bc I had more heart then anybody else on that field. My mentality was an always will be is the bigger they are harder they fall and Ive gained a lot of respect/friendships due to that aspect in me. Ive been a fire fighter since 16 an have recieved many awards from life saving awards to top runner of the year and last year I recieved fire fighter of the year and was the youngest person to ever do that. Jo Im sure this will suprise you more then anything else. I broke the barrier. I am a United States Marine. Not just any Marine either , My job is infantry which means Im a grunt fighting on the frontlines of afghanistan. Anything is possible you just have to have heart. Jo this is just a summary of what Ive been through. Im kinda new to this Ive never posted a blog on a website before. I have the whole facebook an myspace page get up but not like this. I wish there was something I could do to help others.

      • Wow, I actually am very surprised you are a Marine! I thought nystagmus was an automatic disqualification. Well, a big fat THANK YOU for being awesome and fighting for our country! I think you are an inspiration. It’s hard to find people with nystagmus who have used it as a positive influence in their lives. It’s very easy to let it be a barrier, but it doesn’t have to be that way. I think by just making this comment you are helping give others encouragement. Would you mind if I put this comment in a regular post?

        Haha, I’m picky too :p

  2. Pingback: Personal Nystagmus Experience – Johnathan « The Shifty Eyes Blog

  3. Well I don’t’ know if I can ask about this here to you ,but yeah knowing the fact that we belong to a same subset of human beings, I’ll go ahead to ask you. 🙂 Do you really think that we guys with nystagmus will have problems with computers? I have nystagmus and my eyes have different apertures. Sometimes I feel so irritated to look at the screen. But, my major being computer science and I’m involved in photography and graphic design , it’s a very freaky feeling for me to imagine that something might go wrong with my eyes and I go blind. I may sound a little exaggerated but that’s how I feel sometimes. Anyway, I know I should talk to my doc about all this 😛 but hyst felt like leaning up on a like headed shoulder 🙂

  4. Hi! My name is Tamara Beard and we are in the process of organizing the first official Nystagmus Walk. It will be in April of 2013. Anyways, I was wondering if you could maybe spread the word abut the walk? I’d love to tell everyone already informed of the walk all about your blog. What is your story exactly? I’d be more than happy to tell you mine, if you’d like. Anyways, I hope to hear from you soon and have a great day!!
    Tamara

    P.S. Here is the walks info!

    Twitter= Nystagmus Walk 2013
    Facebook= Nystagmus Walk 2013
    Blog= Nystagmus Walk 2013

  5. I am a 29 year old male with congenital horizontal nystagmus, I am also in the armed forces but had to fight to get wavered to be in the military. I am glad to see there are others out there who are dealing with the same issues i have for the past 30ish years. Thank you for blogging and giving me somewhere to go for info..

  6. Hi I’m a 45 year old guy with congenital nystagmus. I drive I have a trade and still work full time and enjoy what i do. But the last coulpe of years everything is starting to become a blur. glasses work up close but long distance is starting to become a bit difficult. I want to explore the possibility of lasik. Before I dive in feet first I was wondering if any of my shifty eyed associates have any comments or personal experiences with that. Cant wait to hear from someone out there.

    • Rob, I’m 52, have congenital nystagmus and had lasik twelve years ago.
      Positives in my case are no lost, dirty or out of adjustment glasses to wotry about. I saw the same as with contacts but couldn’t stand contacts if there was any kind of sunlight.
      I don’t know what the percentage is but dryness is a problem. I still struggle with this.
      Find a doctor and see if you’re a good candidate. Don’t wait. Age is a factor. Ask around for others that have had it in your area. Also check with your own doctor for a referral. Just because they do a lot or have a great price is not a good reason. These are your eyes. The procedure I got a machine held my eye in place.

  7. So here’s someone with congenital nystagmus who got lasik about 12 years ago at the age of 40. My eyes were alway’s corrected. No lost glasses. No dirty glasses. No glasses that were out of adjustment. Problems that I encountered. Pink eye due to allergy a couple of weeks after the second eye was done. Dry eyes, dry eyes and more dry eyes. Its still a problem today.
    Use care when picking your surgeon. I didnt go to a highly advertised mill or a low cost get you in the door and out. Ais Aftercare is important. I don’t know what the going rate is but at the time I paid 2700 for both eyes done several months apart. The surgeon used a machine to physically hold my eye. I wouldn’t have done it otherwise. During a seminar I attended the biggest questions were how old you were and how much correcton you needed. If you’re going to do it don’t wait til it’s to late. The dry eyes is a big deal for me that I still fight. If it makes a difference I have very little pigment in my eyes. I have always had a DL since 16 but it was close. I always let the eye doctor fill out a vision report for renewels. I think they can now do distance and reading vision on the same eye.

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