Who We Are

New Foundation to Help in Research

From the Cedar Rapids Iowa Gazette, January 26, 1998

Personal experience triggered action

By Ross M. Hagen

Ten years ago while visiting a warehouse on a business trip to Europe, Karen Lotman glanced up at the ceiling and noticed that the rafters were "wavy."

"I mentioned to the foreman that they would have to repair them," she says. "He looked at the ceiling and called on some associates to do the same. Then they looked at me and assured me that the rafters were in perfect order-no waves."

That was when the Haverford, PA., woman realized something was amiss with her eyes. Lotman sought professional help and was advised to wait and see what developed.

Gradually the sight in her left eye began to fail. Doctors found a deposit known as drusen in the back of the retina, a sure sign of macular degeneration. Only 50 at the time, Lotman did not fit the normal pattern of the disease, the leading cause of legal blindness in the world.

"My mother developed macular degeneration in her early 70s," Lotman says. "I did not believe that I would be affected until after 65, at least."

Determined to learn more about the disease, Lotman and her husband, Herb, began to search for information.

"I was shocked at how little people know about this issue, which affects at least 15 million Americans," she says. "People see this as a part of aging. It is important for them to know that it isn't always age-related. Adult onset can come any time. It is important for people to be told how debilitating this disease can be."

The Lotmans formed the Macula Vision Research Foundation and any funds it collects will be used for research and education, the Lotmans say. Over the past 10 years, Karen Lotman's left eye has lost virtually all of its central vision, and she cannot see any color through it.

"If I try to look at a photo or a painting with it, I can't see much of it at all," she says. "The periphery is OK, but if I looked in a mirror across the room, I could not identify myself with that eye."

She retains most of the sight in her right eye, allowing her to continue to drive and read. She is hopeful that it will stabilize.

"Some people don't believe that those with macular degeneration are truly blind because they still retain some sight," she says. "They don't understand that blindness is relative. When you have vision all your life and then lose all but a tiny portion of it, it is devastating."

"The worst part of it is the fact that you can't see the faces of the people you love."