Tuesday, September 14, 2004 11:20 AM CDT
Woman: Macular degeneration has improved dramatically due to study
By SUE SMYSER, Features Writer
Today June Simmons is driving a car and doing things she thought she never could do again.
Simmons of Mattoon has macular degeneration, and during the last few years her failing eyesight had robbed her of doing many of her favorite things.
But all that began to change after she became involved with a clinical trial at the Midwest Eye Institute in Indianapolis with Dr. Thomas A. Ciulla, who specializes in macular and vitreoetinal disease and surgery.
Simmons says she used to paint pictures of flowers and old barns. Now she feels like she's just about ready to try that again.
But about five years ago it was a different story.
She wasn't seeing things clearly. In fact, through her left eye, parts of the picture were missing altogether.
"Things weren't shaped right," she said.
A visit to the eye doctor brought a diagnosis of macular degeneration, and she was told to see a retinal specialist.
"It was in my left eye first and because there was bleeding, it was wet macular, as opposed to dry macular," she said.
The retinal specialist advised her to have the offending blood vessels cauterized, a process called photo dynamic therapy. This stopped the bleeding temporarily.
"The treatment would last three months, then I would go back to have it done again and again and again," she said. "But it didn't help my vision any."
Also at this time her husband became very ill and was hospitalized. After one particular visit with him, she left to go home.
"My right eye was perfectly fine when I went home and went to bed, but the next morning ... I could not read the paper," she said. "Overnight this started in my right eye!"
She began having both eyes treated with cauterization, but while the bleeding stopped, it did not bring back her sight.
"It was depressing," she said. "I love to read. I love to drive and oil paint. All of a sudden I can't do these things any more."
She also roots for the Green Bay Packers and enjoys watching their televised games. But if the plays got very intense and she wanted to really get into the game, she wore some vision-enhancing glasses, which work much like binoculars, with wheels to turn on the side of each lens.
In addition, she was having trouble recognizing people when they spoke to her.
"People looked like a black blob. I went to the mall and people would say, ‘Hi,' but they had to get up very close before I could tell who they were."
Simmons said her mother lost her sight and she wondered if her condition was genetic. But, she said, she would much rather lose her hearing than her sight.
"To lose your sight is very depressing. I didn't want my family to know just how bad I was (feeling)," she said. "Sometimes I would go in the bathroom and turn on the shower or just run water and bawl. I didn't want him (Barney) to know."
Everything began to change for her when she heard on TV about a new drug being tested for macular degeneration.
"I got on my computer and ... found something about a clinical trial and I got ahold of some of the companies."
Time after time she was told she wouldn't be a candidate because she was participating in the photo dynamic therapy.
Finally, she spoke with Jackie Wheeler, registered nurse at the Midwest Eye Institute and coordinator of the volunteers in the program. She was told to come in for an exam to be considered for the study.
But last September, during her first visit to the eye institute, she didn't hear the words she had hoped to hear.
"Dr. Ciulla looked at my eye through a light and said, ‘I don't think there is anything we can do for you.'"
His words hit her like a ton of bricks, and coupled with the stress of caring for her husband, she said this was nearly more than she could take.
But just as she thought she might as well go home, his next words brought hope.
Dr. Ciulla had pictures taken of her eyes and after he looked at them, he came back grinning. Ciulla found one spot that he thought could be treated. "I think we can do it," he said.
Simmons believes that just being accepted into the program was a miracle.
"There are 168 volunteers being accepted nationwide. Out of them, I got the last slot. It was the Lord's miracle for me."
As part of the study, Simmons travels to the Indianapolis clinic regularly to receive an injection into her eyes.
Simmons said none of the participants in the study are supposed to know if they are getting the actual injection or a placebo.
"But I'm 75 and I've been around long enough to know this is not my imagination," she said. "It don't take a rocket scientist.
"When I went there one year ago, the vision in my left eye was 20/300. One month ago, it was 20/32. Every month it gets better."
Her doctor agreed, saying she "is having phenomenal results."
There are risks involved with the study, including infection in the eye, the possibility of losing an eye or receiving a retinal tear.
"But I thought if this is an FDA-approved (study) to try on humans, the Lord's riding with me. I'm not going to worry."
She has one more year to go before the study is over.
Simmons still uses some vision-enhancing glasses and a tape recorder to listen to books instead of trying to read, but she says her vision has improved so much, it has lifted her spirits.
"The bleeding has stopped. I think I can almost take up painting again."
Contact Sue Smyser at ssmyser@jg-tc.com or call 238-6864.
Macular degeneration: What is it?
According to the Macular Degeneration Foundation Inc., in macular degeneration, the light-sensing cells of the macula mysteriously malfunction and may over time cease to work. Macular degeneration occurs most often in people over 60 years old.
Much less common are several hereditary forms of macular degeneration, which usually affect children or teen-agers. Collectively, they are called Juvenile Macular Degeneration. They include Best's Disease, Stargardt's Disease, Sorsby's Disease and some others.
According to the eye institute's Web site, http://www.ciulla.
eyemd.org/, the macula is the center of the retina and is responsible for fine central vision in visually intensive tasks such as reading or driving.
Age-related macular degeneration is the leading cause of irreversible vision loss in the United States.
The "dry" form involves changes in the pigment layer under the central retina, known as the "macula." The "wet" form involves abnormal blood vessels that leak fluid and blood to cause a blinding scar with loss of central vision; it can sometimes be treated with laser or photodynamic therapy.
The study Simmons is participating in at the Midwest Eye Institute is part of a national randomized clinical trial of RhuFab (Lucentis) in age-related macular degeneration.
The trial is designed to "evaluate the safety, tolerability, and efficacy of Lucentis in combination with verteporfin photodynamic therapy (PDT) in patients with age-related macular degeneration (AMD)."
While many of the details of the clinical trial could not be discussed, Dr. Thomas A. Ciulla said there are no stem cells involved in the research.
Add your comments
Not already registered?
Then click Here.
Comment policy:
JG-TC.com encourages readers to engage in civil conversation with their neighbors. Comments that are submitted are not posted to the site immediately. They go into a queue to be moderated and may take several hours to be reviewed. Comments posted on Saturday may not be reviewed until Sunday afternoon.
In order to keep the page a set width, long lines (mostly long links) will be chopped. Try putting spaces in your links or consider using tinyurl.com to make a smaller link that you can include.
We will never edit or alter your comments, but we do reserve the right to remove comments that violate our code of conduct.
No comment may contain:
* Potentially libelous statements; such as accusing somebody of a crime, defamation of character, or statements that can harm somebody's reputation.
* Obscene, explicit, or racist language.
* Personal attacks, insults, threats, harassment or inciting violence.
* Commercial product promotions.
If you have any questions, please contact our moderator.
|
|
CLICK TO ENLARGE
|
|
|
