6 Things People With Stargardts Disease Wish You Knew

What is it?

Most people wouldn’t be able to tell you seeing as how it only affects about 1 in every 10,000 people. But for that 1 person it becomes a hellish part of day to day life.

Stargardts disease is a form of Juvenile-Macular Degeneration causing irreversible damage to the macula- a small area inside of the retina that is responsible for the sharpness and clarity of our central vison. Most people with this disease are diagnosed in their early to mid teens with vision ranging from 20/200 to as low as 20/800. 20/20 is normal vision range while anything over 20/200 is viewed as legally blind in the United States- hence leaving the patient permanently disabled. Those afflicted with Stargardts disease may also find that they will lose a large amount of their ability to differentiate between colors and certain color combinations and contrasts leaving them partially colorblind as well. Stargardts disease is very rare and only about 5% of the entire population carries the gene. The disease can only be manifested into full form if each parent possesses the gene mutation and still there is only a 25% chance that the child will fully develop the disease. People with Stargardts often struggle with daily activities and many suffer from depression while transitioning from once being able to see and function efficiently to needing to rely on the help of assistive technology and sheer will just to get by.

Now that you know a little bit more about what it is here are a list of a few things that people with Stargardts disease really wish you knew:

1. Glasses Won’t Fix It So Please Stop Asking

If I had a quarter for every time someone asked, “Well why can’t you just get glasses?” I’d retire to a nice mansion off the coast of Rhode Island right next to T Swizzle.
It doesn’t quite work that way. If we could have had our 20/500 vision fixed with a pair of glasses then it really wouldn’t be that big of a deal. It would just be like you needing to go to the doctor to get your prescription bumped up a bit. But sadly, for the afflicted it is a lot more complex than that. Glasses won’t fix what’s going wrong inside of a retina any more than a stent can prevent a brain aneurism. That’s just not what it’s for. In short, if you’re one of the very few diagnosed with Stargardts it is most likely going to be one of the most trying and traumatic events of your entire life.

2. Just About Everything Scares Us

Imagine that it’s only three months until your sixteenth birthday and you’ve been studying diligently for your drivers’ test silently dreaming of all the wonderful things your future has in store for you. But the next day you notice something isn’t quite right and you can’t read the writing on the chalkboard at school anymore. You confide in your friends but they think you’re making it up for attention. Later your mother makes an eye appointment and upon completion of your exam the doctor accuses you of lying during your test and demands you retake it stating that it’s “Impossible” and that you have the vision equivalent of a 95 year old man. No surgery, no magic pill. Nothing can help you.

If that doesn’t strike horror into someone I don’t know what will. Not only is your vision bad but it is getting worse and it becomes an anxious waiting game between you and your many doctors to see where you finally start to balance out.

Now what? How will our futures turn out, how will we take care of ourselves, and how can this be happening?
We’re terrified and a part of us always will be for the rest of our lives.

3. We’re Embarrassed

We can’t really see anymore. Everything has become an ominous blur. If people found out they’d avoid us because we’re different now. Is that really true? Well for the most part… not really. But some may. And yes, these people are very very shallow indeed. But in this day and age especially at a young age we beg to be accepted by everyone. So although the reality of the situation is that most people will be accepting and try to be helpful and compassionate we fear the ones who will avoid us and make jokes behind our backs. So in response we stay silent about our plythe hoping to blend in with everyone else. We would hate for people to see what we have to do to get by.

Like wearing one of these Star Trekesque devices on your head just so you can watch TV.

Or carrying magnifying glasses in your back pocket or holding your cell phone to your nose in attempts to read what your friends are up to tonight.

We shouldn’t be but we’re embarrassed that we’re not just like you. And it’s completely absurd. But it’s true.

4. We Pretend to Make You Happy

No matter how hard you try we will never be able to leisurely play video games or enjoy a movie with you on your 37” LED flat screen without some goofy technology attached to our face that barely even helps or feeling an intense amount of eye pain from over strain.

Hell, we may not even be able to sit through a movie at the theater with you and be able to relay back anything that happened in it. But we still like to go. Despite the frustration and pain that it may cause we don’t want left behind just because we can’t enjoy it the way most others can. We will always tell you that it is “fine” and that we can see it when you ask because we fear that you’ll never want to do anything with us again. We want you to think that we’re normal. That nothing is wrong and we can totally see the concert from twenty rows back or the way the sun slowly changes from pink to orange and sinks into a lushes aquamarine lagoon below. We wish we could more than you do. But it’s just never going to happen.

5. We Feel Alone

Living with this disease is like living in a big fuzzy bubble. A bubble with a one way ticket in and zero chance of ever coming back out. It’s lonely, depressing, frustrating, physically agonizing, and just plain sucky (for lack of a better word). It can be hard to socialize with people because we’ve come to a new level of maturity and we’ve come to it at a very young age. We appreciate more, we care more, we understand more, and we hurt more. We get angry when people take things for granted and bullying has become something that we absolutely will not tolerate. Our independence has been cut off leaving us no choice but to be chauffeured around every time we want to go to the mall or grocery shopping because we will never be able to drive. Most of the time people don’t mind but some of us are still always worrying about that one person that will get tired of it.

We really shouldn’t but that’s just our minds wanting to be accepted again.

6. The Anxiety Is Terrible

Going to unfamiliar places is probably about a ten on the all mighty scale of unease for people with Stargardts. We hate going places alone so please don’t make us. Simple things such as curbs and stairs become a nightmare to us if we’re unfamiliar with them. The same goes for unfamiliar stores, roads, and especially airports. Seeing as how we can’t see more than a few feet in front of our faces we tend to get lost very easily. And it’s just plain awful. Airports are hard enough to maneuver through when you can actually see what you’re doing. But the anxiety doesn’t stop there we are always worried. We don’t see in crowds very well and sometimes when we’re seen by a friend or co-worker we don’t notice them in return. Even if they’re just across the room. Sorry. Please, don’t take this as being rude. We just don’t know that you’re there and more than likely if you want to be noticed you’re going to have to approach us first.

And let’s not even get started on the anxiety associated with traveling and finding a job.

Growing up is hard enough and growing up with Juvenile-Macular Degeneration is even harder still. For the most part we just want someone to hug us and say that everything will turn out okay. And even though that is very true we still need to be reminded every once in a while. It can be very lonely when you don’t think that anyone understands what you’re going through and it can be very easy for people to forget that someone is suffering from this disease because we show no physical signs or deficiencies. My advice to anyone going through this right now…

Speak up. Speak out. And never stop moving forward. TC mark

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