The Challenges of Living with Keratoconus

The Challenges of Living with Keratoconus - Photo by National Eye Institute, National Institutes of Health

We have asked our community members what are the biggest challenges they face in their lives because of Keratoconus. Here is what they had to share:

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Our friends @Keratomania have asked the same question. here are some of the comments posted by their fans:





10 comments:

  1. No driving license in my country with keratoconus. Commuting 4 hrs/ day. Missing little things, like precise shave which make me look like a slob. Cutting toes is a nightmare. Local healthcare won't finance surgery, because my sight "too good".

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  2. The almost total lack of depth perception when viewing surfaces upon which I am walking. A shadow on a floor or a change in carpet color or tile looks identical to a step to me. I need to pause and tap the darker area to confirm a change in the surface or not. I have changed my behavior when walking in crowds to pay close attention to how those in front of me are walking and if they step up or down. Very even lighting makes this worse as there is no contrast and I can trip because I can't a step.

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    1. You sound exactly like me! I draw going out of the house. I miss steps and often have to ask who I'm with (if I'm not alone) 'is that a step there'. It's a nightmare when out alone.

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    2. You sound exactly like me! I draw going out of the house. I miss steps and often have to ask who I'm with (if I'm not alone) 'is that a step there'. It's a nightmare when out alone.

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  3. Frustration has been the biggest challenge for me. People walk by, most of the time can't recognize them without contact. Later they tell me, funnily or seriously, I have too much ego. I just try to make jokes about that, it's embarrassing. I suck at most games because I can't see clear enough. I have headaches I suspect because of keratoconus. And so on.. Don't get me wrong, I consider myself optimistic. I try to bring the positive side of everything even when there are no positive sides. But that is'not always possible. And all the above scenario leads to frustration. Then I mess up things I shouldn't have messed up which further increases my frustration and on. It's a vicious cycle really. I think for most of us frustration is the ultimate problem that's the hardest to battle.

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  4. Night driving in rain is realky tough. Having one eye that is much worse than the other is a challenge. The vision can also fluctuate. Have had a corneal transplant for each eye, and long recovery periods,etc. then epi lasek in rt eye. Now i wear glasses. Big thick lens in rt eye and thin one in left eye..oh well, could be worse right?

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  5. Night driving in rain is realky tough. Having one eye that is much worse than the other is a challenge. The vision can also fluctuate. Have had a corneal transplant for each eye, and long recovery periods,etc. then epi lasek in rt eye. Now i wear glasses. Big thick lens in rt eye and thin one in left eye..oh well, could be worse right?

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  6. My challenge has been to find in Mexico the treatment we need... Ive been Travelling for around 20 years to USA because there has been the only place Ive been adapted with specific Contact lenses that correct my vision... and they are very comfortable... but the high cost has been an issue.
    Ive tried a lot of contact lenses thoughout my life and the only ones that really make me see clear and aré comfortable are scclerals...
    they are new in mexico but nobody has been able to addapt them as well as in USA so I will have to continue travelling.
    Without contacts I can barely see... I have trouble with light, glare, and night vision is poor still wearing sclerals.

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