The photo to the left is how I see the world with Keratoconus, even with my high prescription glasses. Well, this how I see with my right eye (the good one), my left eye is even worse. This makes my life a lot difficult at times. u_u
I can’t read a real book anymore, which was something that I loved to do once upon a time. I have a Kindle for reading, as I can adjust the font to “grandma” size, however it’s not the same as turning the actual pages and smelling the fresh ink of a hard copy book. I get bored with my Kindle, with half of the fun experience of reading stripped away, and haven’t finished a book in a few years now.
Writing emails, blogs, and novels take effort for me to do. I can’t spend as many hours doing so, as my eyes will began to water excessively, migraines are a constant battle I must fight, and my vision dims to the point where everything is a blur on the screen, without any distinguishing features to the letters.
I’ve called this exertion to my eyes, “sundowning” in my past, a term for those who suffer with dementia, because of the similar symptoms I feel during the moment when my eyes fail me completely: increased confusion, agitation, and restlessness. I know it’s an exaggeration to call those moments by that term, as after a night of rest my eyes return to its low vision of before, and I can attempt writing again. No offense to the real sufferers of dementia. Hugs!
Walking down or up an unfamiliar set of stairs is difficult for me, as I don’t have them memorized and can’t see the new pattern of stairs well. I have to try hard not to… well… tumble down them and break my neck or stumble up them and break my face. Finding my seat in a dark theater is a horrifying experience, especially if there are stairs involved.
Movies or TV shows with subtitles are not enjoyable for me, as I can’t see the English translations or keep up with the speed of it while trying to decipher it. I’m dying to watch an anime named “Attack On Titan”, however the Netflix version is in subtitles. I may try to find the English dubbed on a pirated site… Erm… I mean, NOTHING! O_O
I have to be careful when I handle anything sharp or when I cook meals, as I could injure myself without meaning to. I bump into walls sometimes, run into doors, and lose my balance while walking, because I’m unsure of my footing and have poor depth perception. I have to be extra careful when crossing the road, as I can’t always see the traffic coming in either direction.
With this condition I can never be issued a drivers licence, be allowed to own a firearm, or be allowed to join the military, as I can’t pass the eye test, even while wearing my glasses. And these are things I would be interested in. Well… maybe not owning a firearm, but to learn how to use one, yes.
And lastly, I have to sit way too close to screens in order to see and write. My nose is literately a few inches away from my laptop screen right now, in order to write this blog.
My condition will not get better on its own, it will only become a lot worse. It won’t happen overnight, as this a progressive disease, but one day my eyesight will change from the first image above to the one on the left. That’s a street view, by the way (you can click to enlarge). Can you make out anything in that photo? Welcome to the POV of my left eye.
So… why is it that a surgery (CXL), is covered in other countries because of its 95% success rate of stopping Keratoconus in its tracks, yet it isn’t approved in the US by the FDA? Why was it denied approval last year? Why isn’t it covered by insurance, costing a patient $4,000 or more out of pocket in clinical trails? What about the people who can’t afford it? What about the people who aren’t lucky to have friends (like I do), who can offer to pay for it?
Without CXL, the eyes will lose sight and the only option left is Corneal Transplant, which can be covered by some insurance even though the procedure cost way more. However, one must go blind first to be eligible for it… and wait for a donor… and then hope like hell that the body won’t reject the transplant, a risk that comes with with any other transplant.
Are we being neglected, because Keratoconus is a rare eye disease (Between 1 to 5 in every 10,000 people are affected) and therefore there’s no real profit in approving it? Is this a money thing? Probably.
It just seems a lot wrong to me, that I have to explain to my international friends why my insurance will not cover something that is easily covered in their countries. Or that in Mexico, CXL costs $800 (or so I was told) and that if a person is desperate enough, they would have to leave their country in order to get a procedure to save their vision.
Come on, USA, the land that boasts “We’re number one! We’re number one!” all the time… you’re really lagging behind in healthcare and everything else, compared to the rest of the world. We’re number LAST! This why the other countries laugh at us and point. And they’re well justified to do so, because we’re a huge joke! u_u
Thanks for reading. I just wanted to vent a little. For everyone in the US who suffers with Keratoconus: Please hang in there and keep hope alive! ^_^v