Wet and Dry, Early Onset Macular Degeneration

by D. Dobbs
(Atlanta, Ga, USA)

I have Early Onset MD, diagnosed at age 43. I have both wet and dry MD. My right eye has the wet type and the central vision was gone before I was diagnosed.

My left eye has the dry type and is now about 2/3 gone. It has recently progressed farther.

I have been diagnosed under several types including Stargardts, and finally given the diagnosis, Early Onset Macular Degeneration.

They have said that mine doesn't exactly fit type.
Other family members also have it. None of us seem to follow the same type.

My mother, deceased, had it. Then my brother who is 13 years older than me was diagnosed in his 50's.

Then I was diagnosed at 43, the youngest in the family and the youngest diagnosis. 4-5 years ago my older sister was diagnosed in her 50's.

We believe my niece, who is 46 may have it developing but she has no insurance and cannot be examined yet.
Our oldest sister, 64, does not have it, neither do any of my mother's siblings.

Of all the children of my siblings and myself who may have it, only one, the daughter of the sister who doesn't have it. My daughter, 23, does not have any signs but she is very young.

I am now 55 and have been lucky that my 'good' eye has held out for over 13 years, although it seems it will now become harder for me to keep the vision I have.

I live in the Atlanta area of Georgia, USA
I would be interested in any clinical trials in this area of the country, or possibly others.

Reply

You and your family members may be interested in a clinical trial on family history and genetics. My husband and I are both participating as my husband has a strong family history of macular degeneration.

The study is out of Jules Stein Eye Institute in California, but participants can live anywhere is the U.S.

The name of the study is GARM II: A Study on the Genetcis of age Related Macular Degeneration

"The original study (GARM I) has been conducted for more than 18 years at the University of Pittsburgh Medical Center (UPMC).

GARM II is a nationwide research study about age-related macular degeneration in the next generation of adults (49 to 65 years old).

The purpose of this study is to identify the hereditary and exposure risk factors that lead to the development of ARM (Age related maculopathy).
Participants will communicate with the research staff through a protected and confidential website and use this website to complete a number of questionnaires during the course of the study (see below).


For genetic analyses, the participants will mail in easily self-collected saliva samples in special containers.

Eye photographs and eye health records are sent to the research center from local sources through the Internet. Individuals are not expected to come to UCLA in order to participate."

If this interests you or any of your family members you may contact the Jules Stein Eye Institute at 800-286-8581 or e-mail at garm@jsei.ucla.edu.

Kind Regards,

Leslie Degner, RN,BSN