Publication Date: Friday, December 10, 2004
Looking out for each other
Looking out for each other
(December 10, 2004) Glaucoma patients bond over loss of sight
By Diana Reynolds Roome
Christopher Saleh held his left eyelid down and gazed intently through his right eye. He has done this often since finding out four years ago that he has glaucoma.
"You check out your view on the world to see if it's getting reduced," he said. "Am I getting worse? Am I missing a couple more dots?"
The dots, Saleh explained, are like disappearing pixels on a screen. With glaucoma, small holes appear in the field of vision which, if untreated, can get larger until areas of sight are blotted out. In Saleh's case, his view is compromised by a diagonal band across the center of his right eye. It's this area he checks to make sure it's not growing.
If it is, he admits there's not much he can do about it.
"This is the most frustrating thing about glaucoma, especially for someone like me who likes to take control," Saleh added. "[There's the] fear of the unknown, fear of going blind."
Yet far from allowing himself to passively suffer fear and frustration, Saleh has taken action, not only for himself but also on behalf of other glaucoma patients, too. With the nearest glaucoma support group as far away as Marin County, he decided to start his own in the area.
With the help of Camino Medical Group's education department, and the group's glaucoma specialist Dr. Elizabeth Snedden, he secured a room for monthly meetings and started hand-distributing fliers to ophthalmologists' offices.
At the first meeting in January, he was the only person to show up. Refusing to give up, he put out more fliers and tried getting in touch with eye specialists to ask them to spread the word to their glaucoma patients. Getting responses wasn't easy, but slowly attendance grew, and now between eight and 12 people show up at the meeting room in Sunnyvale. They ranged from people trying to maintain fairly good sight to those who are legally blind.
"We all share problems," said Lillian Timm, who lives in Sunnyvale and has two siblings with glaucoma, too. "It's most enlightening to hear others talking. I've learned a lot from that, especially about operations and medications. Our doctors are so busy they can't point out all the strategies."
"My father had glaucoma and he didn't know it until it was too late and he went blind," said Mary Washington, who also attends in hope of learning more about the disease. She is an African-American and therefore six to eight times likelier than other Americans to contract the condition.
Washington went for eye tests regularly but when her own glaucoma was eventually diagnosed nothing was explained to her -- she was simply given medications and told she would be on them for life.
"You don't know what questions to ask, and sometimes doctors are so geared to what they're doing they don't think it's important to talk," she said.
As Washington and many others have discovered, glaucoma is a complex disease with no obvious cause and sometimes no symptoms until sight starts to fade, at which point the damage is irreversible. For this reason, glaucoma is known as the thief of sight.
"Glaucoma is the eye's plumbing system gone bad," said Snedden, who explained that when fluid in the eye does not drain properly it can build up pressure. This pressure can damage the optic nerve at the back of the eye. Glaucoma is a common cause of blindness and cannot be cured. But if diagnosed early and properly treated, it can be held in check.
Early diagnosis is the big challenge, as it's estimated that while over 3 million Americans have glaucoma, only half of them know it. Diagnosis is difficult because there are over 30 different types of the condition and causes are not fully understood. What is known is that it's more prevalent in people over 60, those with high blood pressure, diabetes, near-sightedness, or a family history of glaucoma.
"More than one out of four adults over 50 has one of the risk factors for glaucoma," said Snedden. "The best way to detect it is by regular and complete eye examinations."
Snedden suggests an exam every four years with a qualified ophthalmologist. Though optometrists sometimes pick up signs during eye checks for glasses or contact lenses, they cannot make a diagnosis, though they can refer the patient to an ophthalmologist.
Saleh, a program and marketing manager at Sun Microsystems, was alerted to his glaucoma during a routine check-up with his optometrist, who noticed that the optic nerve in his right eye didn't look normal. Visual field tests, which require detecting and registering lights blinking on a screen, showed that Saleh could not see them all. The "puff test" which measures pressure and is a major diagnostic tool for glaucoma, had not shown anything abnormal. However, a later visit to Snedden confirmed that he did have "primary open angle glaucoma," probably the most common type.
Saleh, who was 45 at the time, was stunned. He had always worked out and eaten a good diet, and at that point was unaware of any family history, although his mother, now 81, had been recently diagnosed with glaucoma. He was so healthy that he hadn't filled a prescription in years.
All of a sudden, he was on four medications -- all of them eye drops, which "are a ten-times bigger pain than a pill," he said. The drops have to be administered with great care, lying down and pinching the tear ducts to prevent the medication from draining away. Many people report unpleasant side effects, though Saleh did not experience any.
He was at first reluctant to accept the diagnosis, but had no choice but to do so when his sight started to deteriorate a year later. What bothered him most was the thought of the damage that was done to his eyes before he realized he had glaucoma.
"Once you've lost sight, it's gone forever. So then it's all about minimizing future vision loss," said Saleh, who will be on medications for the rest of his life. He also underwent an operation to improve the drainage in his right eye.
Saleh is constantly trying to understand more about the disease. "I question everything. I drill my doctor. It's like being a Sherlock Holmes of eye disease."
He also visits Web sites and chat rooms on the topic, and keeps tabs on new drugs, research and clinical trials. One thing he still wonders is whether he inadvertently exacerbated his condition by drinking large amounts of water very quickly after running, an act that can cause eye pressure to go up.
For Saleh, the glaucoma support group he founded is a way to share ideas, learn more and, above all, take what could be purely negative and turn it into something positive. Whenever possible, Saleh finds an expert to speak to the group.
"I need to stay engaged with this so as not to be controlled by it -- taking action helps me.
"Being able to help other people helps, too."
E-mail Diana Reynolds Roome at firstname.lastname@example.org
The Glaucoma Support Group meets on the fourth Wednesday of every month from 6:30 to 8 p.m. at Camino Medical Group's Urgent Care Center, Conference Room 2, 201 Old San Francisco Road, Sunnyvale. The next meeting is Dec. 22. Glaucoma Research Foundation: www.glaucoma.org.
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