My Point Of View

kc_blurred_visionThe 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!

fallingdownstairsWalking 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.

637_blurred_visionMy 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.

I200268231-001t 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



8 thoughts on “My Point Of View”

  1. hi there, interested to know why you struggle with glasses when you could wear contact lenses that would correct your vision? check our blog for details
    we are on facebook and twitter too just search #keratoconusgb
    you are right about cxl- why the FDA is so slow in approving we do not know, we have had cxl for well over ten years in the UK- for free!
    good luck

    1. Hiyas, thanks for reading my blog! :-)
      Well, I struggle with glasses instead of using the contacts, for two reasons. One, I’m afraid of putting things in my eyes and I know that getting contacts will most likely result in me not wearing them. Secondly, I can’t just go for the affordable contact lenses that most insurance cover, as my condition calls for the special hard contact lenses that are NOT covered by my insurance. It’s not as pricey as CXL, but it’s out of my price range still, so I’m pretty much stuck with glasses for now. :-(
      I shall check your blog and “follow” it! Thanks!

      1. Sorry to hear this. Contact lenses do offer the best option for vision correction. You get used to putting them in and out- hell I CS do it in the dark. It’s a fear worth overcoming if you can.
        Even after cxl you’ll most likely need vision correction. (It’s not a cure, it just stops the kc progressing) that could be glasses but lenses really are the best.
        Would hypnotherapy help?
        Good luck

      2. Yes, I’m well aware that CXL is not a cure, only a measure to stop the loss of eyesight completely. I’m also aware that I would still need vision correction afterwards. I am hoping that I will be one of the rare percent where CXL approved vision a bit, so my glasses would be suffice. And the contacts do not stop Keratoconus, so if the disease progress without the surgery, eventually the contacts will be rendered moot anyways. However, even if I were to try for contacts and get over my fear, I can’t afford them anyway. My insurance doesn’t cover it. Thanks for trying though! I had a very handsome eye doctor (extremely charming too!) who have tried his best to convince me that I should try saving up for the contacts… which would take me many years to do anyway. He couldn’t convince me either. LOL! Someday, if I ever have the money for it, I may try the contacts… my main concern right now is the surgery to stop the progression right now. :-)

  2. Sorry to hear you’re struggling so much. Have you tried soft contacts which I presume would be cheaper? For me the difference between soft contacts and RGP’s is minimal… but I get better vision from either of them than glasses. Really, glasses should be reserved for mild/moderate keratoconus whereas yours sounds more advanced.

    I do understand the struggle to afford all these different things, as it can be an expensive road.

    @Dweezil1968 it’s a bit misleading to state that the UK has had CXL for free for over 10 years. I’ve just been through it myself and battled my hardest to get funding but was denied… it’s basically postcode lottery. I had to pay £1,500 per eye, as well as £325 for glasses and £110 per year for my contacts. Luckily I can afford this, although I don’t want to pay for it, but I don’t think you can put a price on your vision, is there really anything more important!?

    1. Yes, I would most likely try soft contacts, as I could afford them better and they seem less scary to deal with. Sadly, my eye doctor insist that soft contacts are useless to me. D’oh! They refuse to issue them for my condition. I do believe that I am in the advance stage of Keratoconus, as my eye doctor did mention total corneal transplant will be my next and final stage… if I don’t try CXL first before the disease progresses. It’s a shame that any of us have to struggle with these costs at all, because it’s not like it’s a vanity thing of getting plastic surgery or breast implants, this is about our sight and not going blind!
      Unfortunately, I’m a poor woman (really poor, I make under $8,000 a year), so I can’t really keep up with the cost of living (food, utility bills, and shelter) and pay money for my sight too. There’s just no way for me to manage it without the assistance of health insurance coverage. That would come down to making a choice in either eating meals, living in the dark, or being kicked out and living in the streets. And more bad news is that even if I had the most top insurance available in the US, that insurance still do not cover CXL and they’re a lot “iffy” when it comes to the hard contacts I would need instead. I’m really embarrassed to admit it, but the US have very poor ethics and policies in health care in general. I have better luck getting quality health care in a third world country. :-(

      Ah, even though it has cost you a pretty penny for your CXL and contacts, it’s still a better price than what we have here in the US. Not by much, as I still couldn’t afford such a price out of pocket, but it does sound a lot less intimidating than $2000 per eye. And I should count myself “lucky”, because other places in the US are charging higher than that! :-O

  3. Yes no offence but I often find American policies are rather rubbish and a poor deal compared to what us Brits get.

    Only thing I will say is don’t listen to your consultant, lol. If you want to try soft contacts, then bloody well insist that you get a trial. I wonder, could you get a trial without paying? I have to pay for my contacts, but not until they’re perfect. So I was able to ‘try before you buy’ sort of thing.

    In advanced keratoconus they probably won’t be as good as RGP’s, but… they should be better for glasses, they are for me at least.

    1. No offense taken! It’s the truth, a lot of American policies are rubbish! I’d laugh, if it wasn’t so damn sad. Sigh…
      Well, I guess I could insist more about the soft contacts. I do believe that my insurance does cover the soft contacts well, as it pays for glasses. And if not, I can save up and afford the soft contacts in the matter of a few months, all the same. I shall try again with my doctor and try to convince him that soft contacts is my best bet. Otherwise, I’ll have to struggle with my eleven year old glasses. I thought they would at least try to change the prescription on my glasses or give me a new pair for my own comfort (my old ones have dull and scratched lenses, which I’m sure isn’t helping. And the nose pads have worn away too), however my doctor folds his arms and announce like some kind of god, “We can not give you a prescription any higher than you already have. So, there’s no point to reissuing your glasses. You need to pay for the hard contacts or the surgery, otherwise we can’t help you.” And that kind of proclamation just crushes my heart and causes me to feel hopeless. :-(
      Thanks for giving me some hope, Oily Cripps! I much appreciated it!

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