Possible Stages

Eye doctors often spot irregularities in our corneas long before we develop symptoms. Some have told our members that our corneas look like "orange peel" or "hammered metal." Or they tell us we have "guttata," or endothelial corneal dystrophy (these terms often go in one ear and out the other particularly, when the patient is not yet experiencing symptoms). Or they say the disease progresses slowly and may never cause us a problem. Or they tell us our eyes are many years older than our body. A few were told we have a progressive corneal dystrophy and will go blind. (What a terrifying way to break this news!) And some doctors note it on the chart and don't even mention it to us, perhaps hoping to prevent premature or unnecessary fear and anxiety

Part of the problem of coping with Fuchs' dystrophy is that it is so unpredictable. Even corneal specialists are reluctant to make an educated guess at what will happen with any individual patient's eyes. A number of our members first noticed problems with glare and light sensitivity, resorting to tinted or Polaroid eyeglasses with antireflective coatings, wraparound sunglasses, and a variety of visors and hats. Night vision is seriously affected. Star bursts and haloes around headlights, tail lights, and street lights may take the Fuchs' sufferer away from night driving quite early on.

Another stage of Fuchs' is a foggy or cloudy vision caused when excess fluids build up in the cornea or, the impurities aren’t properly cleansed by the endothelium. This fogginess might be worse in the morning and clear up later in the day, or it might stay foggy all day (such as on a humid day), or it may come on suddenly at any time. Our members have noted that crying or having a stressful situation often brings on a case of the foggies immediately. Eventually the foggies may become chronic so that the sufferer becomes legally blind and the only way to regain sight is through a corneal transplant.

We with Fuchs' are very lucky that only a rare few of us have developed corneal blisters, which cause pain if they break. The pain ceased after those members had corneal transplants. Our support group gives those members special encouragement.