A Blurred Life
By Zoe Martell
Nystagmus and ocular albinism have both been around for hundreds of years. Some people are affected by either disorder, but very few are affected by both. Only 1 in every 1,000 in America are diagnosed with Nystagmus, and only 1 in every 20,000 worldwide have Ocular Albinism.
Considering that these disorders are not very widespread, not much is known about them and how they may worsen as time goes by and possibly affect people's future.
In a conversation with Lacie Haffner, a senior at Medina High School and someone who has both disorders, I found out how her life differs from others and how she balances her different roles in life with these conditions. The following conversation has been condensed and edited.
This diagram shows the difference between a normal eye and the eye of a person with nystagmus.
Lacie Haffner’s cheerleading pictures captured by Aasiyah Holmes. She is a very active member of the cheerleading team.
What is your disability called?
Well, I have really bad vision due to an eye condition I have called nystagmus. I also have another condition called ocular albinism. To describe them a little bit, ocular albinism is a lack of pigment behind your retina which causes my eyes to be very light blue. A lot of people actually have this but are just not aware. I also have nystagmus which is an involuntary shake of your eyes that causes them to be blurry and there is no cure that will make it stop shaking. I also just have bad vision on top of that so I do wear contacts to fix my vision but nothing will stop my eyes from shaking.
When and how old were you when you got diagnosed?
It was something I was born with but I was diagnosed with nystagmus when I was 2 or 3 years old. We actually didn't know about my ocular albinism until a few years ago, it was just assumed that I had it due to the fact I looked very similar to others that had it, but then I got tested and it was fully confirmed.
What are some challenges you have faced due to these conditions?
These conditions make pretty much everything more difficult in general. I would always say it's anxiety, but it's anxiety because of my eyes. The thought of going to school and knowing you won’t be able to see the board, or having to talk to your teachers to make sure you sit at the front of the room does make it much more difficult for me and would always stress me out. Jobs are also more difficult because of my disorders and people not understanding some of the accommodations I need. These are just some of the challenges I face, but it has taught me to be more outgoing and able to talk to people and communicate that I am not able to see.
Is your blindness supposed to get worse as you get older?
It is all a perspective thing because my eye doctor is not 100% sure. It is very rare so no one really knows, but so far it has gotten worse throughout my life, so they think yes.
Does that change how you look at your future and goals?
It actually does make me scared for what the future holds. I am not exactly sure what I would do if it continues to get worse. One thing I do know is that I want to live in a city because everything is much more accessible without a car, which is nice considering I can not drive.
I know you have many leadership roles around the school, has your disability caused more challenges in these roles?
I feel like it honestly has but again I just did not realize or notice. It honestly inspired me to do more. Like I said, it made me more outgoing and more willing to talk to people because I am just used to having to speak up because I am not able to see. I also think I have done a good thing by separating my disorders from my leadership roles and things I am involved in. I don't want people to look at me differently because I can't see or for them to think I deserve something more than others because I am blind.