Dry Macular Degeneration - Paradise, California
by Laura
(Paradise, CA, USA)
I am inquiring for my 89 year old mother. She has dry AMD in both eyes and is "legally" blind.
Still able to run her own home, though. Pretty sure her vision is worse than 20/60. Is there any help?
REPLY
Hi Laura,
There is a study called A Study of Safety, Tolerability, and Evidence of Activity of FCFD4514S Administered Monthly or Every Other Month to Patients With Geographic Atrophy
It is for patients with advanced dry macular degeneration called geographic atrophy
The age criteria is 60 - 89 years old. Contact the study coordinator to get more information.
Kind Regards,
Leslie Degner, RN, BSN
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Dry Macular Degeneration - California
by William
(Los Angeles CA)
I have intermediate dry macular degeneration. Los Angeles California.
1. I read a blog about blocking blue light with sunglasses, and do not find the kind of information that sun glass sellers should provide. We need some kind of Consumer Report to provide guidance.
2. I read an Australian study suggesting a soft red infra[red light, but have no information of what or where to get one.
3. My retinologist said the supplements don't work. I read a study that said only the zinc in the supplement had any statistical effect.
4. My retinologist said nothing about blocking blue light or treatments with soft red infra-red light. Given the fact that wearing blocking sunglasses (at least while not driving) cannot do any harm, I can only assume he is ignorant.
REPLY
Hi William,
Thanks for your questions.
1. Sunglasses that offer protection from blue light are tinted orange, red/orange, yellow or amber. Sometimes you will see a % sign in the description of the glasses, letting you know how much of the blue light is being allowed in (not blocked)
blue blocker sunglasses
2. I am not aware of the infra-red light.
3. Macular Degeneration Vitamins
According to the U.S. Federal government's National Eye Institutethe Age-Related Eye Disease Study found that:
"taking high levels of antioxidants and zinc can reduce the risk of developing advanced age-related macular degeneration (AMD) by about 25 percent."
"the AREDS formulation, while not a cure for AMD, may play a key role in helping people at high risk for developing advanced AMD keep their remaining vision."
Vitamins for Macular Degeneration
At this time the only studies in California for dry macular degeneration are for advanced AMD called geographic atrophy.
Kind Regards,
Leslie Degner, RN, BSN
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Dry Macular Degeneration - California
by Julie
(SJC,CA,USA)
Hi,
I am a 51 year old female from San Juan Capistrano, California, USA.
I am interested in the Soliris injections for Dry Macular Degeneration.
I was diagnosed 4 years ago.
Thanks.
REPLY
Hi Julie,
Soliris is another name for eculizumab. Alexion Pharmaceuticals, the makers of Soliris, along with researchers at the Bascom Palmer Eye Institute at the University of Miami School of Medicine are investigating it's use for the treatment of dry macular degeneration.
Dr. Phil Rosenfeld, the Principle Investigator did a great e-interview for us. Read what he has to say about this study and how to participate here:
Macular Degeneration Treatment Breakthrough
Kind Regards,
Leslie Degner, RN, BSN
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Early Stage Dry Macular Degeneration - California
by Dennis
(Long Beach, CA US)
Age 66
Southern California
Macular degeneration clinical trials in my area?
Reply
There is one study in Inglewood, California for dry age related macular degeneration.
Pfizer is sponsoring the study. Click on the link which will then take you to information on the study.
To find a contact you will need to click on
"to obtain contact information for a study center near you click here." You have to fill out a form and then someone will contact you.
Safety And Tolerability Study Of RN6G
This is a Phase I trial looking at safety and is also a double blind, placebo controlled study.
Leslie Degner, RN, BSN
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Dry and Wet Macular Degeneration - California
by Ellie
(San Diego CA)
I"m a 64 y/o active white woman/journalist/RN with diagnosed dry AMD (drusen) for about 12 years.
I have not had much decrease in vision until 2 weeks ago when I experienced an episode of wet AMD. I am receiving Avastin every 6 wks.
Probably not relevant, but also was dx with celiac disease 7 years ago.
I'm interested in any research for dry AMD in the San Diego area.
REPLY
Hi Ellie,
Thanks for your e-mail. Here is a study for wet macular degeneration with several sites in California:
Dose Ranging Study of Pazopanib to Treat Neovascular Age-Related Macular Degeneration
Kind Regards,
Leslie
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Wet Macular Degeneration - Long Beach, CA
by Georgia
(Long Beach, CA USA)
Vision loss in Right Eye. Diagnosed with Wet Macular Degeneration. 49 years old.
Reply
There is one study in Los Angeles.
1. Study of Ranibizumab Administered Monthly
Leslie Degner, RN, BSN
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Dry Macular Degeneration - California
by Rita
(Glendora, Ca)
Was diagnoised with Dry Macular Degeneration about 2 years ago ,it has slowly gotten a little worse.
I am taking the prescribed macular degeneration vitamins.
I am female 80 years old.
REPLY
Rita,
Upon doing a search for you for dry AMD in California, one clinical trial the age cutoff was 60 years old and another clinical trial is in Sacramento. This study is not an interventional study - but rather observational.
One study that may interest you is called the GARM study.
Here is their stated goal:
"The goal of this study (GARM II) is to determine how the combination of genetic, dietary, health and exposure factors such as light, diet, and smoking contributes to one's risk of developing this condition.
This is not a treatment study and does not involve any preventive therapies or direct treatments of ARM."
You may qualify for this study if you meet this criteria:
"Individuals who have experienced vision loss from ARM and have at least one brother or sister who also has experienced vision loss from ARM can participate in the study.
They also need to have at least one adult child (from 49 to 65 years old) who wishes to participate in this study."
You do not need to go to the study site, but rather fill out questionaires on-line.
For more information go to:
GARM II: A Study on the Genetics of Age-related Maculopathy
Kind Regards,
Leslie Degner, RN, BSN
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