Nystagmus Tag

Today is Nystagmus Awareness Day (aka Wobbly Wednesday), set up by the Nystagmus Network here in the UK. Nystagmus is a condition where the eyes shake and move involuntarily all the time, which makes it harder to focus and concentrate on things. It can come as part of the package with other eye conditions or on its own, and it has different levels of severity in different people. So it’s a very varied condition. For a detailed explanation of how it affects me personally, check out my Living With Nystagmus post and video.

To mark the day, I’ve been tagged to answer some questions on nystagmus by Youtuber Jessica King (Jessylrk) – thank you Jessica! And if you have nystagmus too, then I tag you to do this as well. So here are my answers to the questions, and I hope you find them interesting. You can also watch a video of my responses as well.

1. Are you the only one in your family to have nystagmus?

No, my mother has it as well, I inherited both of my conditions from her. So as I’ve been visually impaired since I was born, I’ve never known any different.

2. How has your nystagmus affected you throughout your life so far?

It basically means I can’t see things clearly at a distance, as I can’t maintain focus on things like signs or any kind of detail. So if I want to read things or see detail, it’s either got to be close up, or in large print, or I use my monocular (my little telescope) if I can’t get close to it. So I can’t drive for the same reason, because I can’t read signs or registration plates or focus clearly on the road ahead.

But I’ve adapted to that, and it’s not stopped me living my life. I’ve been able to make friends, and have a good education, and get a job, and get out and about and have fun. So it’s not been a barrier.

3. What are you registered as? Are you partially sighted, severely sight impaired, blind, etc?

I’m partially sighted. That’s how I term myself, and that’s how I’m registered with my local authority.

I also call myself visually impaired, although that’s a very vague term. Some people think that visually impaired means blind, but it doesn’t. There’s a whole spectrum of eye conditions, and within each of those there is a huge degree of variation. I spoke about this recently for the RNIB’s How I See campaign – do check that out along with the posts and videos made by others too, because it shows you just what a breadth of eye conditions are out there.

And even within nystagmus, people have very different conditions and very different levels of sight. So terms like visually impaired and partially sighted are very broad, general terms. But partially sighted is how I’m registered with my local authority, and how I often tell people that I’m visually impaired. I don’t use the term blind, because my sight is reasonable – far from perfect, but still ok relative to many other people, so I don’t consider myself to have any kind of blindness.

4. Do you have any other conditions with your nystagmus?

Yes, I have aniridia, which is what caused the nystagmus. Aniridia means I don’t have an iris in my eye, which means I can’t control how much light enters my eyes. So I’m very sensitive to bright sunlight and glare, and I find it much harder to adjust in the dark. Check out my Living With Aniridia post and video for more information.

5. Do you have any visual aids to help you with your condition?

I have my monocular as I mentioned earlier, which is a little telescope that I use to read things at a distance, such as signs. On my PC and on my phone, I will use the accessibility features to invert the colours, because that takes the glare off the screen when it’s white on black. I will also use the zoom feature and large print options to make things easier to read on the screen as well. My phone also has a magnifier built into the camera software, which is useful for looking at things. I also get paperwork blown up into large print, and may use CCTV units or handheld magnifiers to read things. I don’t use speech, because I don’t need to. It’s mainly just the magnification or looking at things at a distance that I need the help with most.

6. Do you have any advice for parents of children with nystagmus?

It’s not the end of the world, so don’t panic. If you’ve never had a child with a disability before, or never had a child with nystagmus, that it can be very worrying, wondering if your child will struggle in life. But actually, with the right support, they’ll be fine. And there’s a lot more understanding and technology out there these days to help with that.

Sure, it may be hard to begin with. It’ll be hard for you to adjust, and it might be hard for the child to adjust sometimes. That said, however, children have to grow up and learn about the world around them anyway – it’s completely new to them regardless of whether they have a sight problem or not. So it’s just that your child will be learning in a slightly different way, and they will have to do things slightly differently.

So as time goes on, and you and your child get more confident, things will improve. You’ll keep learning, and your child will adapt to things, because they have to. They’ll want to live their life, and you’ll want them to live their life. So just make sure the love and support is there, and help them to get the support they need, as and when they need it. Use the internet as well, as there’s a lot of advice, support and information out there.

If they have that support, then there’s no reason that they can’t live a full, happy, independent life and have a lot of success. I’ve achieved so much in my life that I never imagined I would when I was little. So try not worry too much. I know it’s scary, but you and your child will be fine in the long run.

7. Describe your vision in 3 words.

Short, shaky and sensitive – because I have poor distance vision, I have shaky vision because of my nystagmus, and I’m sensitive to light.

8. What help did you get in school and work?

I went to a school for the visually impaired, so they naturally had everything I needed there. I could get stuff in large print, I could use the CCTVs to blow things up on the screen, and I could use the tools on the computer to make computers easier to use. And the staff worked very closely with us to make sure we were understanding the work, and getting everything right, and weren’t falling behind. So I had all the help I needed there, thankfully.

At work my manager and colleagues have been very supportive. And I’ve been able to get help from the Access To Work scheme, which subsidises the costs of software, equipment, travel costs, etc. So I got a CCTV that I could read paperwork under, I got magnification software for the computer, and I had the cost of taxis subsidised to get me to and from work easily and safely. I don’t need the taxis any more now that I work from home, but I still have the CCTV and computer software.

Over to you!

And that’s the end of the questions. I hope you found my answers interesting. If there’s anything you want me to expand on then I’m happy to respond to your questions.

Thank you again to Jessica for tagging me. And if you’re reading this and have nystagmus, then I tag you to do it as well. Here’s the list of questions for you to copy:

1. Are you the only one in your family to have nystagmus?
2. How has your nystagmus affected you throughout your life so far?
3. What are you registered as – partially sighted, severely sight impaired, blind, etc?
4. Do you have any other eye conditions with your nystagmus?
5. Do you have any visual aids to help you with your condition?
6. Do you have any advice for parents of children with nystagmus?
7. Describe your vision in 3 words.
8. What help did you get in school/work?

Happy Nystagmus Day! 🙂