Keratoconus

As I have mentioned before I have Keratoconus (KC). This is a problem with the eye where vision is distorted because a literal "cone" develops on the cornea. A lot of problems are commonly associated with this condition. I really never realized that other people don't see the same way I do until I found a night-driving simulator. I also never knew what caused certain other problems until I found the KC Forum where other people discussed problems they have.

Before I go into the rest of this, I would like to say that there are a lot of people that are in a lot worse shape than I am. My sister-in-law had to go through several surgeries because of detached corneas (or was it retinas - I have forgotten which). She is still having problems with things such as double vision. I feel bad for her because she has had such a rough time of it and I wish that this had never happened to her. The detachments came on suddenly, for no known cause, so it was a horrible surprise and frightening experience for her (not to mention the trouble she still has).

I am lucky because most of my problems have come on gradually, so I have had time to get used to them. I have worn glasses since I was 5 or 6 and had 20/450 vision when I was in my teens. My vision has never quit deteriorating, and my uncorrected vision is now well past 20/800 (where they quit trying to determine a "score" for visual acuity). I have also always believed that I will eventually go blind, so when I found out that my problems were due to a condition that can be worked with (even if I eventually have to have surgery), I felt great relief. Anyway, what I really wanted to write about was some of the problems that I have found are common to people with KC.

• People with KC, who wear Rigid Gas Permeable contact lenses (RGPs), are regularly thought to be "stoned". There are 2 reasons, 1 or both of which may be applicable:
  1. Enlarged pupils while wearing contact
  2. And/or red eyes
  I find this rather comical because for years I was accused of being stoned because my pupils were enlarged. At the time it wasn't funny, as people would not believe me when I said I wasn't doing drugs (not that I never did any - but certainly not at the early age, or to the extent that people thought). I also had no idea why my pupils were enlarged. What is actually comical about the situation is that when I was smoking pot, I had started wearing glasses again and people commented on how my pupils looked much better! Now I wear soft lenses, because I cannot tolerate RGPs anymore - and I haven't had any comments about looking stoned (no, I haven't done drugs in many, many, many years). I don't know why RGPs produce the problems and soft contacts don't (either that or people don't bother commenting anymore).
• People with KC, who wear glasses, commonly have a hard time with stairs and cracks in the pavement. We see extra stairs or cannot tell where stairs begin/end. Cracks in pavement (or on the floor) look like steps to us. Going down stairs, for some reason, is much harder than going up stairs. Don't even get me going on uneven ground! This is related to the next one:
• People with KC, who wear glasses, commonly have little or no depth perception. Thread a needle - yeah, right, heck I can't even thread shoelaces with my glasses on. The wearing of contacts helps correct this problem, although not necessarily all the way.
• People with KC, who wear glasses, commonly bump into furniture and walls with their shoulders, hips, knees, knuckles etc. I have been known to hit myself in the head (or knock my glasses off) with a kitchen cabinet door because I couldn't tell where it was (that depth perception thing again). We all think we are just clumsy but contacts almost always correct this problem.
• People with KC, who wear glasses, commonly see massive night "halos", "stars" and "ghosts" - especially during night driving or in high-glare situations (night driving in the rain is the worst!). Things that give off light, such as Christmas tree lights, can also produce the same problem even during daylight. The more developed the KC, the worse the problem is. The wearing of contacts can help control the problem; although the halos, stars and ghosts are still seen, they are much smaller and dimmer than with glasses.
• People with KC, regardless of whether they wear contacts or glasses, have fluctuating vision through the day. Although my corrected vision is officially at 20/30 (for my best eye), there are times I can't see much at all. At other times I have double vision or just a weird "hazing" of my vision. We tend to squint, turn our heads this-way-and-that-way or even shake our heads to try to get our vision to clear back up. We may look at people sideways, because at the time that is the best vision we can get.
• Related to fluctuating vision is KCer's ability (or not, as the case may be) to tell the difference between numbers and letters. On a regular basis 8's become B, E, Q, 3, 9 or even 0 (or vice versa). Other numbers and letters are just as troublesome. Although there are times that the number/letter is clear - just as often it is a struggle to tell which category it fits in.
• KCer's tend to have an inordinate amount of "floaters". I normally have 10-20 floaters in each eye, which is a real drag as everything appears to have black spots! Trying to look at something under a microscope is a real challenge.

Boy, I sure got windy on this one, so I will end it before everyone gets really bored (not that anyone has probably made it this far anyway).