Posted on 10/17/2003 6:51:16 AM PDT by Gritty
GREEN RIVER -- A young man from the Green River community diagnosed with an eye disease that results in blindness is participating in experimental research that has improved his vision.
The experimental treatment conducted by an ophthalmologist in Connecticut could bring hope to thousands of people suffering from macular degeneration.
Aaron Maybin, 23, was told in July by three area ophthalmologists that he had Stargardt's disease and would be completely blind in five to 10 years.
Stargardt's disease is the most common form of juvenile macular degeneration. It is an inherited disease. Unaffected parents, who are carriers, have one gene with a disease-causing mutation paired with one normal gene. The child inherits the two diseased genes, one from each parent, needed to cause the disorder. The disease affects about 26,000 Americans.
There is no treatment or cure for the disease and vision cannot be corrected with eyeglasses.
"Our lives were awful for a month knowing he was going blind," said his mother, Terry. "He was going to lose his job and we knew he was going to lose his driver's license any day."
Numerous friends and family members of Aaron and his parents, Homer and Terry, began praying for a miracle and researching the disease, said his mother, who is the secretary and day care director at East Flat Rock United Methodist Church. The family attends Cedar Springs Baptist Church in Green River.
One friend found a Web site discussing new research being conducted by Dr. Gerard Michael Nolan at Nolan Eye and Laser Center in Farmington, Conn. The Maybins contacted the doctor and people participating in the study.
One 27-year-old girl told the Maybins she was diagnosed with Stargardt's when she was 20, went to a school for the blind, had a seeing-eye dog and had not been able to see in several years.
"She had been going to Dr. Nolan for two years and can now watch TV and has her driver's license back," said Maybin's mother. "One doctor said, `You have nothing to lose. He will be blind. If he was my child, I'd be on a plane and checking it out, too."'
The Maybins flew to Connecticut in August for the first appointment with the doctor.
"I thought I had nothing to lose so I might as well try it," said Maybin, a 1998 East Henderson High School graduate and employee at Wilsonart.
By the time he arrived in Connecticut, Maybin's vision had deteriorated from 20-60 to 20-100, his mother said.
Maybin was given eye drops to take back to his hotel room.
"He was to read for 20 minutes to weaken the eye, then apply one drop in the eye and keep his eyes closed for eight hours," said his mother. "When we went back the next morning, his vision was 20-40. I was very careful to watch the rows on the chart to make sure the doctor was not exaggerating."
Since taking the drops, Maybin has noticed vision improvement, he said.
"I notice it most at night," Maybin said. "I can read road signs. I can read without having to strain at the words."
Maybin places a drop in one eye every four days. He returned to Connecticut four weeks later and the disease had not progressed.
Maybin's story is spreading locally by word of mouth and seven people in Henderson County suffering from forms of macular degeneration have gone to Connecticut or have scheduled appointments.
The drug used at the Nolan Eye and Laser Center to treat these patients is Echothiophate iodide.
"This is an off-label usage of a legally marketed medication," Dr. Nolan said in a telephone interview Tuesday. "The drug retards and improves vision to a higher level indefinitely. In the three years of research on more than 200 patients, all patients chronically losing their vision had improvement."
Nolan, a diplomat of the American Board of Ophthalmology, is a graduate of Georgetown Medical School and completed his residency at Cornell Medical Center in New York.
He said the drug had been used for 40 years for the treatment of glaucoma, but better drugs had replaced it and it is no longer being manufactured.
"These therapeutic benefits may have remained hidden as the result of two key factors," he said.
Nolan said the dosage of the drug must be very low, much lower than what was prescribed for glaucoma.
"Higher dosages have not been noted to have similar effects," he said. "Due to this low dosage, the medication must be administered immediately prior to six to eight hours of uninterrupted sleep in order to guarantee absorption."
Stargardt's disease is one of a number of degenerative retinal diseases, including retinitis pigmentosa and age-related macular degeneration, which may respond to the therapy, Nolan said, adding he is treating the vision loss, not the origin of the disease.
"If this is the case, this therapy may hold the potential to lessen the disability from a number of blinding retinal diseases," he said.
No side effects have been reported, Nolan said. Only one drop is placed in one eye every four days. Four days later, a drop is placed in the other eye.
Nolan received a pharmaceutical patent on the drug Aug. 12 and is seeking a drug company to manufacture it.
"This drug can make blind people see again in doses much, much lower than used to treat glaucoma," Nolan said.
A spokesman with the Food and Drug Administration in Washington said there is nothing illegal with a doctor prescribing a legal drug to be used for an off-label disease or ailment. One common example is a baby aspirin a day used by adults to help prevent heart attacks.
Nolan said the FDA will be involved in the phase three research to begin this winter at the Wilmer Eye Institute at Johns Hopkins Hospital and University. A spokesman at the institute confirmed a doctor had been approached to conduct the study.
"We believe the Lord did this so we could help other people," said Maybin's mother. "We want families to know there is hope."
Maybin is now hopeful he may not go blind, but he lost out on a trip to Australia.
"We asked him if there was anywhere he wanted to go and see before he went blind and he wanted to visit Australia," said his mother.
A trip for the spring was planned. It has been canceled, she said.
Giles can be reached at 694-7867 or by e-mail at jennie.giles@hendersonvillenews.com.
The mechanism of action of ECHO in this patient with Stargardt’s disease is not yet known. Our hypothesis is that dilute ECHO makes ACh more available to diseased neuroreceptor populations across the retina. Increased ACh levels may amplify the synaptic potential of the surviving photoreceptors and ganglion cells, making it possible for these reduced populations to achieve threshold and resume the propagation of visual information to the brain. This effect would parallel previously described mechanisms of drug action in other neurological diseases, such as Parkinsonism, Alzheimer’s Disease and Clinical Depression.
Great insight,(no pun intended) thanks.
I'd bet it helps micro-circulation in general, my experience has shown many problems in general can be traced to this root cause.
(from the article) The drug used at the Nolan Eye and Laser Center to treat these patients is Echothiophate iodide.
My mother suffers from macular degeneration and it has made life very frustrasting for her. She has always been a strong women (raised 6 kids pretty much alone) and it isn't easy for her to actually need help.
I'm going to bring this info to her next appointment.
Is this common?
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