Post count: 1569

    Hi there,

    I understand completely ~ our eyes are so important in how we see the world and how we think the world sees us! I’m sorry to hear that you’re going through this. It’s true that it’s possible for your eyes to return to normal, but the fact is that your information is correct, that’s pretty rare. It really depends on the mechanism of your disease, the extent of the changes, the length of the "disease curve." Some people have a very short curve, others a bit longer. The doctors at our recent conference indicated that the symptoms are usually worse, and last longer, for smokers. So, if you smoke, do quit. If you’re around smokers often, minimize that exposure.

    Also, younger people are more likely to have issues with the fatty tissue behind the eye expanding, while older patients have swelling in the actual muscles, and that dynamic can make a difference in future prognosis as well.

    So it’s really impossible to say for sure, but we can say that every disease curve has a period of improvement near the final stability, or "cold phase." So you know that is ahead of you, and it’s possible that a lot of the changes you’ve experienced will reverse. The thing is that it can take some time. In the meantime, try to keep your stress down, and make sure that you keep your eye moist, since damage to your cornea is something that cannot be reversed. You may want to invest in some lightly tinted sunglasses that you can comfortably wear indoors, since that can minimize the effect of flourescent lights and forced air, plus you can kind of "hide" behind them and that may help you feel more comfortable talking with people. Everyone I talk to that has the eye disease is upset by the fact that it’s difficult to speak with people without either explaining what is going on or watching them fumble with their eyes, not knowing where to look or what to say. Some say it’s better just to begin by explaining what’s going on (in very basic terms), others are overwhelmed at having each conversation begin that way. It’s a tough spot to be in, I know.

    Remember, one of my favorite lessons from Bobbi (who will be returning to this forum soon, watch this space! <img decoding=” title=”Very Happy” />) is that we all look better when we’re smiling than when we’re not. Try to put things in perspective, and remember this is not going to last forever. Once you’re stable, you can look at the options you have for returning your eyes to the state you remember.

    There are LOTS of hints and tips in the messages here ~ I’m going to be signing off soon, but I’ll keep an eye on this thread and pop back in with suggestions as they come to me. Best of luck to you. Chin up, keep smiling!