Fading Of The Light

It's a cruel visual trick: you see someone in front of you, but you can't make out her features. Is it a friend? A stranger? Your own child? This is the heart-wrenching reality of severe age-related macular degeneration (AMD). It attacks the macula, home of the sharp central vision that enables us to read fine print, distinguish colors and drive safely down the road. Victims of AMD retain their peripheral vision, but the details in front of them--including the faces of the people they love most--blur and fade. "When you lose your vision," says John Bukowicz, 74, who suffers from AMD, "you lose everything."

Today an estimated 13 million Americans have some form of the disease. As the population ages and life spans lengthen, the number will multiply. Doctors know little about AMD's causes, and they have no cure. Still, there is hope. Last month the FDA approved Visudyne, the first drug to treat the most serious AMD. And scientists are actively researching other therapies. In the meantime the main challenge for patients is learning how to monitor the condition, and live with it.

The disease takes two main forms. In the less severe "dry" form, accounting for the vast majority of cases, yellowish deposits called drusen accumulate beneath the macula. Some patients have trouble adapting to dark movie theaters or difficulty with contrast (pouring black coffee into a dark mug, for example). But dry AMD--sometimes referred to as early stage--is painless, quite often symptomless and progresses slowly. If only one eye is affected, the other compensates; some patients will not even notice a problem. In either case, most victims will never suffer grave vision loss.

The problem is that about 10 percent of patients with dry AMD do go on to develop the devastating "wet" form, in which new blood vessels develop around the retina, then leak and scar. Dry AMD can turn wet suddenly and without warning--and much of the damage takes place in the first year after onset. Once one eye is affected, the other is more likely to succumb. The standard treatment, a hot laser that zaps the vessels, can sometimes halt progression--but it damages the retina and works only in a small group of patients. Scientists are now testing other therapies, including radiation, retinal translocation (moving the retina away from problem vessels) and even an electronic-chip implant.

Visudyne is the newest treatment. The drug is injected into the bloodstream and collects in the eye's damaged vessels. Then, in a process called photodynamic therapy, it is activated by light, destroying the vessels without harming other parts of the retina. Photodynamic therapy is a welcome advance, but it's not a miracle. It can reduce the chance of progression, but won't cure the disease. The procedure--which costs about $2,000--may need to be performed several times per year. And only about one third of the 200,000 patients who develop wet AMD each year have the predominantly "classic," or clearly defined, pattern of blood vessels that makes them good candidates for the procedure, says Dr. Neil Bressler, of Johns Hopkins University School of Medicine and chair of the Visudyne trials.

Can you be very lucky and ward off AMD altogether? Nobody knows. Aging certainly plays a role. Family history appears to as well. Scientists are now learning more about lifestyle habits that could be additional risk factors. In one study, for example, heavy smokers were more than twice as likely to develop the condition than nonsmokers. Quitting doesn't seem to help; once done, the damage seems permanent. High cholesterol may also play a role. And some researchers believe that diets rich in dark, leafy vegetables like spinach and collard greens may reduce the chance of developing AMD, thanks to antioxidants like lutein and zeaxanthin, which are also contained in the macula.

With the advent of photodynamic therapy and other experimental treatments, prompt detection is "more important now than ever," says Dr. K. Bailey Freund of the Manhattan Eye, Ear and Throat Hospital. Start by having routine eye exams after 40 (check with the American Academy of Ophthalmology, eyenet.org, to find a doctor in your area). If drusen, the hallmark of AMD, are detected, your doctor may give you an Amsler grid, which looks like a checkerboard. Be vigilant about looking at it every day (each eye separately) andcall your doctor immediately if the lines begin to look wavy or blurred.

In the end, the most frustrating effects of the disease may be isolation and loneliness. Dr. Lylas Mogk, director of the Michigan Visual Research and Rehabilitation Center, found that one third of her AMD patients were depressed. Many feel helpless and angry. But, says Mogk, "there are a lot of things you can do to make your life easier." Start by making simple changes at home to ward off accidents and stay independent: add bright lights and increase contrast (light carpets with dark furniture). For guidance, ask your ophthalmologist if there is a "low vision" specialist in your area who can provide information on everything from special magnifying machines to large-print playing cards. Many patients won't be helped by medical intervention, but any-one with diminished eyesight--whether it's moderate or severe--can benefit from vision rehabilitation. Most simply don't know it's available. For more information, contact the National Eye Institute (nei.nih. gov) and Lighthouse International (lighthouse.org or 800-829-0500). Fees vary across the country, but a typical low-vision evaluation costs between $100 and $200 and equipment can add hundreds more. Vision rehabilitation is generally not covered by Medicare, but legislation that would mandate reimbursement is now pending in Congress.

Finally, if a friend or loved one suffers from AMD, be patient and understanding. Even if her eyes can't see you, her heart knows it's you.