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New treatment helps man's faltering sight (macular degeneration)
Hendersonville Times-News ^ | October 17. 2003 | Jennie Jones Giles

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

TOPICS: Culture/Society; Extended News; Miscellaneous; News/Current Events
KEYWORDS: blindness; vision
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To: Gritty
Botched Lasik Procedures are fairly common. Ones botched like mine (misassembly of the tool leading to penetration of the cornea) are fairly rare. There are a lot of complications. The vast majority of them are not reported to the FDA. Here is mine. Read the BS at the bottom. It was only reported after a lawsuit was posted. The people who manufacture this tool were soulless bastards. They stood by while 13 people that I know of had their vision destroyed and did NOTHING. You think that everyone has a conscious and will react like you. That is just not the case. There are some people who will sit around for a good paycheck and allow people to be blinded.
21 posted on 10/18/2003 8:06:45 AM PDT by Nov3 (one day at a time since 10/12/1984)
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To: Nov3
There are some people who will sit around for a good paycheck and allow people to be blinded.


I hope you have your sight back by now.

22 posted on 10/18/2003 4:32:11 PM PDT by Gritty
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To: Gritty
23 posted on 10/19/2003 7:53:14 AM PDT by null and void
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To: Gritty
Bump up & THANK YOU for posting this!

My mom has MD, and none of the conventional treatments work for her.

I'll forward this to her, so she can ask her doctor to hopefully get this for her (if that's possible, since it's "experimental"?).

Worth a shot, anyway!

Thanks again...
24 posted on 10/19/2003 8:07:21 AM PDT by Peace4EarthNow (SAVE A WOMAN'S LIFE -
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To: Nov3
Me too.
25 posted on 10/19/2003 8:14:29 AM PDT by Mini-14
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To: Nov3
The web site owner of wishes to publish your story.
26 posted on 10/19/2003 8:15:57 AM PDT by Mini-14
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To: Gritty
I got a cornea transplant after 4 laser surgeries in my left eye.
27 posted on 10/19/2003 8:16:33 AM PDT by Mini-14
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To: Gritty; Nov3; nmh; Quix; norraad; The Westerner; NEPA; null and void; BlessedBeGod; ...

I found more info and I thought you would be interested.

Note that this article mentions the name of the drug: "Echothiophate iodide", they say that this drug has been used to treat glaucoma, the dosage for use against macular degenaration is much lower, than the dose used for glaucoma and that this medication is no longer manufactured in the US.

I did a search -- found that it is available in Europe, and that it can possibly be gotten via ophtalmologists in the US. This article also mentions the drug can cause cataracts ( in the dose used for glaucoma).

I think one should find out the dose used by Dr. Nolan (mentioned in the original posted article).

Anyway, here is the link the this second article (with a phone no. ophtalmologists can call on how to get it):

Echothiophate iodide shortage leaves US specialists struggling to find alternative for acute cases (march 2003)

Mr Petkus said the company has informed ophthalmologists about the availability of the drug through the IND process. The AAO received a statement from the company in early January and it is now posted on the AAO website
“I didn’t see the statement until recently, while the shortage has been going on for about a year,” Dr Bizer said.

Mr Petkus estimates that the facility in Gosport will have FDA approval within the next 30 to 60 days from the time of writing. Then, the company will begin marketing the drug in the US again.

“It will be available to ophthalmologists without going through the IND process,” he said.
There is no shortage of the drug in Europe. To obtain an information pack with directions on how to get echothiophate iodide through an IND process, US ophthalmologists can call 1 800 666 7248 between 8 a.m. and 8 p.m. EST.

28 posted on 10/19/2003 8:22:43 AM PDT by FairOpinion
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To: FairOpinion
Thank you so much!
29 posted on 10/19/2003 9:31:50 AM PDT by BlessedBeGod
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To: Mini-14
Are you glad that you did?
30 posted on 10/19/2003 12:39:23 PM PDT by The Westerner
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To: FairOpinion
Thanks for the additional information. I also have forwarded it on to somebody who needs it.
31 posted on 10/19/2003 12:59:41 PM PDT by Gritty
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To: Gritty
32 posted on 10/19/2003 1:03:27 PM PDT by dennisw (G_d is at war with Amalek for all generations)
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To: FairOpinion

Will pass the info on.
33 posted on 10/19/2003 1:07:31 PM PDT by Quix (DEFEAT the lying, deceptive, satanic, commie, leftist, globalist oligarchy 1 friend, assoc at a time)
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To: FairOpinion
Thank you soooo much for going to the trouble of listing this information. My Mom has the problem and slowly going blind. I'd like to help her if I could.

Many hugs and love you way!



34 posted on 10/19/2003 2:50:02 PM PDT by nmh
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To: The Westerner
I got rid of about 75% of the visual distortions with the transplant. My best corrected vision is significantly improved. However, there is noticeable pain in my eye at times that makes it difficult to wear contact lenses. It's a mixed bag.
35 posted on 10/19/2003 3:37:11 PM PDT by Mini-14
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To: Mini-14
Ok. Thanks, that's what I want to know. Will pass the info on to my friend who's been told to have the transplant. Pain is not good to live with.
36 posted on 10/19/2003 5:30:13 PM PDT by The Westerner
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To: The Westerner
37 posted on 10/19/2003 6:57:52 PM PDT by null and void
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To: null and void
Monday bump for the weekend warriors...
38 posted on 10/20/2003 7:37:45 AM PDT by null and void
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To: FairOpinion
Here is a personal follow up to the posting of this article.

I relayed the information of your post and mine to my Mother, who relayed it to her sister (around 90), who has the problem and whose eyeight is badly failing.

Here is the upshot of the latest e-mail (11/04) from my cousin (her daughter):

Mom had her first appointment with Dr. Nolan yesterday. He ran all sorts of tests etc. and said he thought she could be helped with the drops. One drop was put in worst eye last night before bed and this morning I took her back to Dr. Nolan's so he could repeat the simple sight tests and note any improvement. She could definitely see and read more than yesterday on both eye chart and color tests. More so with good eye but also improvement in bad/worst eye. She is thrilled...we are excited....all are praying that improvement continues. Can't tell you how thankful we are to you for forwarding the information.

She will have one drop placed in bad eye Sunday night and see Dr. again on Monday. After that he will most likely see her at two week intervals.

Dr. Nolan is a graduate of Georgetown, M***'s Alma Mater as well. We liked him. He is what I would describe as a very intense person----very focused on finding the "cure" for visually impaired. He seems a very warm and caring person. Excited about good things that are happening. I would also guess that he is a man of faith. His office is busy but efficient. Read a number of letters sent to him by patients from all over, thanking him for his help and their improved vision. They were pinned to wall in hallway. Met a family from Tenn. today--very happy!

Keep my Mom in your prayers. Will stay in touch and keep you posted.

Needless to say, we are thrilled! In speaking with my Mom this morning, my Aunt last night read 4 pages in the Reader's Digest, somthing she has been unable to do for a long time.

Such a blessing all our family!

39 posted on 11/05/2003 9:29:02 AM PST by Gritty
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To: Gritty
Well, you are the one who found and posted the original article -- I am glad I could post some additional info.

Thanks for giving the update.

It is fantastic news to hear your story, that it really has such miraculous effect.

Please keep me informed -- I also hope and pray that the improvement continues.

I do hope Dr. Nolan is in touch with the manufacturer and hopefully this will be available to more doctors.
40 posted on 11/05/2003 12:33:25 PM PST by FairOpinion
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