A Site for Sore Eyes

At age 16, Cornelius Jones, who had severe aplastic anemia, underwent a bone marrow transplant. Although cured of the disease, Jones spent the next 15 years battling a painful side effect that sometimes afflicts transplant survivors: severely dry eyes.

"It was a living hell on a day-to-day basis," says Jones, who is now 31 and works for a phone company in Houston, TX. "It felt like I constantly had sand in my eyes. Sunlight during the day and bright headlights at night were unbearable, and along with the pain I had blurred vision that could not be corrected by glasses."

After consulting a string of doctors and trying to remedy the problem with artificial tears and tear duct plugs, Jones gave up. "I figured if this was the price I had to pay for staying alive, I'd just have to deal with it," he recalls. That is, until the call came from his mother.

Jones' mother had just seen a TV interview with a Boston-based doctor who described a new technology to help patients with serious eye disorders. Dr. Perry Rosenthal had developed a type of contact lens, called the Boston scleral lens, that rests on the tough white portion of the eye (the sclera) instead of on the sensitive cornea. The lens creates a cavity where a coating of artificial tears can continuously bathe the cornea. The continuous lubrication eliminates the severe eye irritation felt by many patients and, in some cases, even restores their sight.

After a lengthy conversation with Dr. Rosenthal, Jones scheduled an appointment to be evaluated. "For the first time in years, I had a glimmer of hope," recalls Jones.

The new lens did not disappoint. "The minute they put the lenses in I had total relief and total clarity of vision," says Jones. His first stop after getting his new lenses was the movie theatre across the street from the clinic. "I hadn't been able to watch a movie without pain for the past 15 years," says Jones. "Seeing the movie, I was in awe. It was like I had recovered part of my childhood."

Eileen Yarnell also suffered with severely dry eyes. Transplanted in 1992 for myelodysplasia, Yarnell later developed chronic graft-versus-host disease which left her with painfully dry eyes.

"It felt like I constantly had ground glass in my eyes," she says.

Yarnell tried everything-eye lubricants, draining her tear ducts, and plugging her tear ducts. She even purchased a special type of glasses, called chamber glasses, that look like goggles. "They helped keep some moisture in my eyes," she says, "but they made my peripheral vision really bad."

After being "fired" by one ophthalmologist who could do nothing for her, and exhausting a second ophthalmologist's bag of tricks, Yarnell spotted an article in The New York Times that discussed the Boston scleral lens. What particularly caught her eye was the paragraph about BMT survivor Cornelius Jones, who had found relief with the lens. Excitedly, she showed the article to her ophthalmologist.

"She dismissed it out hand," recalls Yarnell. "She said it was just advertising and that if I went to the clinic I'd get taken."

Undaunted, Yarnell contacted Rosenthal and eventually persuaded her reluctant ophthalmologist to send a letter of referral. "After 5-6 years of being in constant pain, I had nothing to lose," says Yarnell.

Like Jones, Yarnell is delighted with her new lenses. "I can finally go out on a windy day or go to a restaurant and not worry about sitting under an air conditioner and being in pain," she says.

Rosenthal says he has treated seven transplant survivors who suffered with severely dry eyes. Although the Boston scleral lens was initially developed for people with different vision problems, he's excited about the possibility of helping transplant survivors who suffer from severely dry eyes.

The lens, which is the size of a quarter, sits on the white part of the eye and creates a space where artificial tears can continually lubricate the eye. It looks like half of a ball. Both Jones and Yarnell say it took about a week to learn how to insert the lens and care for it, and the first tries at inserting it were a little uncomfortable. "But the relief you feel once the lens is installed is well worth the effort," says Jones.

Dr. Rosenthal, who is an assistant professor at the Harvard Medical School of Ophthalmology, says the lens is not for everyone. He requires all patients to have a referral from an ophthalmologist who can provide details about the patient's medical history so that a patient doesn't travel to Boston unnecessarily.

"Many patients who have problems with dry eyes following a bone marrow or stem cell transplant can benefit from artificial tears or other therapies," says Rosenthal. "But for those who have failed all other therapies, the Boston scleral lens may provide the relief they need."

Approximately 62 percent of all patients who undergo an allogeneic bone marrow or stem cell transplant (a transplant using donor cells) develop chronic graft-versus-host disease during the first three years post-transplant, says Mary Flowers MD, head of the Long Term Follow Up Unit at the Fred Hutchinson Cancer Research Center in Seattle, WA. Of those, 60 percent experience dry eyes, although most cases are not as severe as Jones' or Yarnell's.

At present, the only clinic in the US that fits patients with the Boston scleral lens is Rosenthal's Boston Foundation for Sight. A similar clinic exists in Tokyo, and his foundation recently received a $240,000 grant to train other ophthalmologists at university-affiliated hospitals throughout the US.

The lens is not cheap. Several fittings are usually required to determine the correct lens design for each individual's eyes, and all lenses are custom made. The fittings, the lenses and the training to insert the lenses usually take a week. The fee for two eyes is $7,600. "That is our actual cost," says Rosenthal, "but as a not-for-profit foundation we turn no one away because they can't afford to pay. We subsidize maybe half of our patients."

For patients like Jones and Yarnell, the price is well worth the relief the lens provides. It's fantastic not to be in constant pain," says Yarnell.

Attention Caregivers: You're Not Crazy