Keratoconus

That’s the name of the condition I have in my eyes. If you don’t want to read all about it here, and I don’t blame you, just know that the word means cone-shaped cornea. You can see the world as I see it at this website. It also means that even with contact lenses, the remedy of choice, and glasses, my vision often leaves a lot to be desired. I usually see multiple edges on things, sometimes multiple things, particularly high contrast things; the contact lenses often bother me since I usually keep them in for too many hours; and sometimes using the computer gets difficult. I often keep the TV on so I look away from the computer occasionally and focus at a longer distance. In spite of all this I am grateful I can see relatively well, most of the time. I can drive, I tolerate the contacts well and I don’t have too many problems.

Keratoconus tends to be progressive and often leads to corneal transplants. When I was first diagnosed, more than 25 years ago, I did not know how bad it would get. My mother also had this condition and had transplants in both eyes, not with great success. She came close to being blind. Fortunately my condition is fairly stable and I doubt I will ever need transplants. More than any other sense I take pleasure in what I see. I travel to see beauty, to see art. The thought of losing my sight was horrifying. Before my condition stabilized and I was finally comfortable with lenses I spent many days and hours worrying.

This morning I went to an information meeting for keratoconus patients.They showed little videos of transplant surgery. They talked about some of the most common problems and some of the possible treatments being studied. I found it interesting and a little scary. But, more than anything I realized how important it was to be informed and to be “smart” about your own body. Medicine today presents us with so many options and requires that we make our own decisions.For the moment, I am grateful everything remains the same.

6 thoughts on “Keratoconus

  1. Thanks Trinity, I looked at kcfreedom.org and found it very interesting. I really appreciate the info, particularly about Mini Ark. Some years ago a doctor I consulted in Florida suggested there might me something like this in the works. If I get to the point where I can no longer wear contacts, I will certainly go for it before I would consider transplants.

  2. The best place to go for news on the latest treatments for keratoconus is the global foundation’s site. In the US, we are only studying treatments that have been used for a decade elsewhere in the world to halt the progression of this disease.
    Please visit our site, and sign up for the patient support forum, http://www.kcfreedom.org

  3. Alice, If I didn’t have an autofocus camera I wouldn’t be taking any pictures. They were just coming out when I quit working as a photographer and weren’t good enough to enable me to keep going. They are much improved today.

  4. Cheez! How distracting! I had no idea what that must be like. And to think how beautiful the photos you take are. You deserve double the praise! (Pardon the pun.)

  5. I have never heard of this either…I am glad it has stabilized. I have borderline glaucoma, have to have it watched every six months….my pressures are a little too high sometimes…I feel the same way about my eyesight..but it is good to be so informed…

  6. Thank you for telling us about this. Usually I see double or triple equally – both sides, but sometimes when my eyes are tired I see up to six images. I had never heard about this. Thank you.
    You are a dear. I really appreciate you.

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