Nystagmus Tag (Nystagmus Awareness Day)

Hi Blog world,

 

Happy Nystagmus Awareness Day also known as Wobbly Wednesday. During the early hours of the morning, I came across Glen’s (Well Eye Never) Nystagmus tag. Click here to watch Glen’s Nystagmus Tag YouTube Video

Since I have Nystagmus myself I decided to do the tag.

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

I was the only one who has it by birth called (Congenital), however both my grandmothers have a form of Nystagmus called (Acquired).

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

When I was little my mother noticed that I had problems seeing. She took me to see many eye doctors, who said I had Nystagmus, and that I should be fine doing mainstream schoolwork.  However, like most children with Nystagmus, I struggled with seeing my school books and the board. When it became evident that I was struggling in school my eye doctors said I needed to be registered as a student with a visual impairment.

My mother had to fight for many years to get me registered as a student with a visual impairment. In fifth grade I finally started to receive help from a low vision teacher and my school materials in large print.

Now as an adult, the only thing I can’t do is drive. I am currently looking for employment, however with the support I am receiving I should be able to find employment soon.

  1. What are you registered as – partially sighted, severely sight impaired, blind, etc?

All my medical documents state that I have low vision, however I prefer the term visually impaired.

Here in the United states we have the American’s with Disability Act which helps people with disabilities have access of reasonable accommodations to help with employment. I am receiving help through Division of Blind services and Vocational Rehabilitation. The main mission of these services is to help me find employment, and provide me with low vision devices or other services if I need them.

  1. Do you have any other eye conditions with your Nystagmus?

Yes, I do. I have Night blindness, sensitivity to light, lazy eye, and astigmatism. Click here to read more about my journey with Night Blindness

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

Yes, I use a long white cane during the evenings, during nighttime, or when I am in a new environment. I have several magnifiers i.e. dome, or bar, I also use a screen reader called ZoomText, where I can change the color of the screen, and the tracker or pointer, this program also reads the text on the screen.

Another program I use is called Kurzweil 3000, which is a program when I can access regular print books; and I also use this program to write articles and other writing tasks. A feature I really like about this program is that I can change the color of the background so my eyes aren’t as tired.

One of my most favorite devices I use is my talking book player, with this I can access books through Bookshare.org or through my talking book library.

 

Lastly, I use the speech and Siri feature on my Iphone.

  1. Do you have any advice for parents of children with Nystagmus?

Yes, get them the help they need early. I struggled with school until I received my large print textbooks and that helped me a lot. Also, keep a positive attitude towards the condition. Finally, don’t forget there are support groups out there to help answer any worries or concerns you may have.

American Nystagmus Network Facebook Page

Nystagmus Network Facebook Page

The Nystagmus Family Foundation Facebook Page

7. Describe your vision in 3 words.

Blurry-I describe it as like looking through a piece of Saran Wrap.

Loss of quality of vision during the day-my vision is best during the morning after I get a goodnight’s sleep, then my quality of vision gets worse during the day.

Tired- different things such as change in the weather, or if I’m stressed or ill can make my eyes tired.

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

During grades 5-6,  I received large print textbooks and worksheets. Then in sixth grade my family moved to Florida where my teacher of the visually impaired gave me low vision aids, magnifiers, telescopes etc, instead of my large print text to help me be prepared for college and the world of work.  In college, I received most of my books in digital form, which I either converted myself by using Kurzweil 3000 or the disability resource services. I received extra time on tests.

Since for now I am still looking for employment we are not sure which devices I may need, however I know that I will need ZoomText to access the computer.

I hope you enjoyed this tag.

Blog soon,

Amanda Gene

Call to action: Come help make a big splash for a big impact!

Hi Blog world,

 

Grab your swimsuit, goggles, and sun block and jump into a pool! Wednesday, November 1st, is Nystagmus Awareness Day This day is to help educate the public about the Nystagmus, about how it affects people, and what we can achieve with help from the community, medical professionals, and our peers from the online support groups.

 

For those of you that don’t know Nystagmus is a condition where a person’s eyes move continuously, sometimes they move in a vertical, horizontal, or in a circular pattern, and sometimes there can be a combined form of movements. A person can either be born with Nystagmus (called Congenital), or some people can be impacted later in life (called Acquired). Because of these movements our world is blurry, and for some people who have Acquired Nystagmus our world can appear to be moving.

 

There are many different causes of Nystagmus, some of us are born with it because it runs in our family through genetics, for others it’s a result of another condition that they have such as, Optic Nerve Hypoplasia, or Albinism, for some of us there is no known cause. For those that have Acquired Nystagmus sometimes people get it because of vertigo, a head injury or a brain tumor.

Whatever the cause I want the public to know that this condition doesn’t stop us from dreaming big! We hold all different kinds of jobs from journalists to teachers.  There are all different kinds of devices that can help us achieve our dreams, from screen readers to discounted bus passes.

However, we can’t achieve these dreams without help from the public:

–  Be understand that Nystagmus can affect us on a daily basis and there are ways that we can accommodate ourselves-for most of us our quality of vision changes throughout the day, please be patience when we are having a hard time seeing something.

-One of the myths about Nystagmus that I hear on a daily basis is that we can’t do things because of our vision –I would like to burst that myth right now. This myth is completely false! There is nothing we can’t do! except the majority of us can’t drive, and there are ways to get around it such as, carpooling, or taking the bus. There are many success stories on the online forms of children and adults achieving success on a daily basis.

–  Lastly, a big part of the Nystagmus Awareness Day is to raise funds. With these funds the medical community is working hard to improve the quality of life of people with Nystagmus and to help find a cure.

 

To learn more about Nystagmus, the Nystagmus Network charity or to make a donation:  http://nystagmusnetwork.org/

 

To learn more about Nystagmus, the American Nystagmus Network, or to make a donation: http://nystagmus.org/new/

 

If you can’t make it to the pool to make a splash then consider ordering one or both of these wristbands:

 

Click here to order wrist bands from the Nystagmus Family Foundation

Click here to order wrist bands from the American Nystagmus Network

 

Thank you for helping the Nystagmus Network, American Nystagmus Network and the Nystagmus community make a big splash on this very special day!

Blog soon,

Amanda Gene

 

 

 

 

A Day of Hope: Nystagmus Awareness Day

Hi Blog world,

As the title says, today, November 2, is Nystagmus Awareness Day, also known as “Wobbly Wednesday” to my British Friends,  it is a day of hope for me.

Nystagmus, for those of you who don’t know, is an eye condition where my eyes move back and forth. There is no cure for this condition, and its often misunderstood by the general public.

For people from our Nystagmus community we use this day as a fundraiser; these funds are used to help find a cure and the causes of the different kinds of Nystagmus (Congenital and Acquired) .  Not only do we use this day to help raise funds for the medical community; The Nystagmus community provides support for parents of children who have this condition, support for family members who may know someone in their family who is affected by Nystagmus, and peer-to-peer support for people who live with the condition.

For many parents whose babies are just diagnosed with the condition, they are concerned and want what’s best for their child; they often worry about their child’s future; for those of us who lived with the condition since birth,  we can offer tips and advice to help the child have the best possible future.

As for the people who have Nystagmus they offer peer-to-peer mentoring, which offers advice for things that may be a struggle, such as, not being able to drive, how to disclose their Nystagmus during a job interview and  other topics, with the peer-to-peer mentoring and the right support from teachers, parents, friends, family, and the medical community people with Nystagmus can have a full and active life.

For more information about Nystagmus and what you can do to support the community or  a loved one affected by this condition please visit:

http://nystagmus.org/new/

https://www.facebook.com/groups/65729508331/

Thank you for your support on the very special day.

Blog soon,

Amanda Gene

 

 

Wobbly Wednesday Q and A follow up

Hi Blog world,

On Wednesday, November 4th, I told you guys that I would have a “Wobbly Wednesday” Q and A session.

Since I didn’t get a very large response, I wanted to take this time to explain more about what “Wobbly Wednesday” is; and to explain what Nystagmus is.

First, “Wobbly Wednesday” is an annual day in November (November 4th) to help educate, advocate and share success stories with the public.  The people who have Nystagmus can share and help educate the public in many different ways; this can be done from just answering a few basic questions from a common person. To doing something more wide spread-such as holding a Q and A (Like me 🙂 )

Many people, in the public, have either not heard of Nystagmus, or if they have, they are not sure how to explain it.  So here’s a way to explain what Nystagmus is.  According to the American Nystagmus Network, Nystagmus is an eye condition that affects people. It can come in many different forms of eye movements. This includes up and down, side to side or in a circulatory pattern.

Even though Nystagmus does not have a cure, with support from people in the community, including medical professionals, and with the use of low vision aids including glasses or contacts people with Nystagmus can live full lives.

I have had Nystagmus since I was born. I use low vision aids including a screen reader to use the computer. However, this condition has not stopped me from getting a regular high school diploma, and a college degree in journalism. It just goes to show you that with love and support from the people around you, anyone can overcome challenges that they may have.

If  you have any more questions, feel free to ask me in the comments below.

Blog soon,

Amanda Gene

Wobbly Wednesday Follow up….

Hi Blog world,

Yesterday, November 5, was Wobbly Wednesday and in honor of that day I was going to blog a Q and A session. So here’s three common question I get from people…..

1. What is your vision like? It’s kinda hard to explain so I use this analogy, It’s like looking through a piece of Saran wrap. It’s blurry, and as the day goes on I lose the “Good” vision I have.

2. Can you see color? Yes, I can. But some colors are harder to see than others. The colors I struggle with the most are yellow and green, particularly if they are on a white back ground; this made going to school difficult for me because I had to remind my teachers to not to use those colors and to use something darker, like black, so I could see what they were writing.

3. You don’t look visually impaired.. So how can you be? This is the question that hurts me the most. Even though I don’t look like I’m visually impaired, the fact is, I do have an eye condition that makes it hard to see and the result is I do have a visual impairment that makes some daily task difficult to do, and the fact that I’m not going to be able to drive.

If you have any additional questions or comments feel free to leave them down below….

Blog soon,

Amanda Gene

Wobbly Wednesday: Ask me a question….

Hi Blog World,

Today is Wobbly Wednesday.  For this day, I’m doing a Q and A session about my life with Nystagmus, but I can’t do it without questions….So go ahead don’t be shy, and ask me any questions that you may have about this condition and how it can affect my daily life. Ask your questions either down in the comment section below, on Twitter, or on Facebook.

To ask your question on Twitter you can find me at: @AmandaGeneN

To post your question on Facebook you can find me at:https://www.facebook.com/AmandaGenesBlog/#

I’m eager to answer your questions, so don’t be shy and ask away!

Blog  soon,

Amanda Gene