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23andme genetic testing variant for AMD

Hi everyone, I'm a 22 year old college student. I recently did a 23andme ancestry test and decided to go forth and do the health report as well to have my genetic information.
I tested for an increased risk of developing AMD (Age-related macular degeneration) because I am homozygous for the CFH gene with genotype CC, and heterozygous for the ARMS2 gene with genotype GT. This means that I have two variants of the detected gene for AMD, my likelihood ratio was at a 4.49 (larger than 1 means more of a risk to get AMD).
I've done a bunch of research about the condition and how to prevent it and all.
I seen that it is possible to develop it when one turns 50, which is pretty darn young to start losing your central vision.


I'm pretty psyched out now from the results and can't seem to grasp control over my life.
What were your journeys, or what journeys do you know of about someone with a genetic link to AMD?


I had good vision in my teens up until I turned 19 and started wearing glasses because my long range vision got poor. I now wear contacts and glasses to drive, enjoy scenery, etc.
My parents are 44 and 50, no signs of poor vision their whole life.
My grandparents that are still alive are 65 and 75, 65 doesn't have poor vision, she sees fine besides wearing reading glasses, 75 also has reading glasses and recently undergone cataract surgery.


As for my health and diet, my BMI is a 24, so characterized in normal, I get annual checkups at my eye doctor, I don't eat as well as I should ... I should be eating more veggies and practice clean eating more. I should also exercise more for sure, ever since the pandemic struck I have been so home bound.


I am also a hypochondriac... every little thing about health scares me, getting old scares me, and well this test result really made me anxiety levels soar. I can't seem to concentrate on day to day activities as well as I should, I have been having some insomnia nights throughout the week. Well, I'm an anxious person in general.


I want to ask this forum, what were your experiences with AMD, what were your experiences with your family's AMD? Is it as scary as google makes it? Is becoming legally blind really realistic? What does your daily life consist of if you have been struck by AMD, or if you carry AMD variants?
Please advise, I'd appreciate some ease of anxiety.
Thanks.
-Throo Awao

  1. I recognise that you are very concerned and very anxious, but good on you for putting together a carefully written and clear outline of your situation and your questions. You've also done a lot of research so you have built up your knowledge on macular degeneration. My family experience is that both my mother and my father have macular degeneration. My mother developed it in her late sixties or early seventies, and my father in his eighties. I was diagnosed in my sixties and still have pretty good vision. We all still cope well. Even though my mother eventually became legally blind, she still has peripheral vision. Please remember that even though your genetic test shows an increased risk, there is no guarantee you will develop macular degeneration, and if you do, it may not be until much later in life. And even if it develops, it may not progress to a serious stage. There may even be a cure on the horizon. Your parents and grandparents seem to be going well, so that's a good sign. Needing reading glasses or long vision glasses isn't usually a sign of developing macular degeneration. So, what can you do? I try to spend my energy thinking about steps to take now. You've identified that you could eat more vegetables and exercise more. Perhaps that's a good place to start. And you could make a plan to achieve this. If you look at a Mediterranean Diet it is a good way to go. Check out which vegetables contain lutein and zeaxanthin as they're good for our eyes. To sum up, taking the preventative measures of exercising when you can, eating well and having regular eye checks is what I would be doing at your age. With Covid hopefully easing up soon, there will be better days ahead. Try not to let the worries of something that might not ever happen, spoil the days you have in front of you right now. I'm glad you reached out to this community and I wish you all the best. Wendy, Advocate.

    1. Hi Wendy , Thanks so much for your kind and gentle reply. It means a lot to me that you took the time to respond with great detail.
      Your response made me feel at ease and you're right -- I should spoil the days I have in front of me. I somewhat regret doing the testing because it did make me pretty anxious, but on the other hand, everything happens for a reason and taking preventative measures is always a great step and great for motivation.

      I do have one question, how long did it take for your Mom to go legally blind?
      Did she take any medications to prevent the progression of the disease?
      I can't understand the timeline of how long it takes for someone to lose their vision till blindness with AMD.
      Thanks again,
      Throo

      1. Thank you Sharon. I will definitely take note of this.

      2. that's a great plan. All the best. Wendy, Moderator.

    2. I don't want to throw a wrench in things, but you really should check out the NOVA story on genetic testing (particularly 23andme and Ancestry) before putting too much faith into it. The episode is Secrets in our DNA. You can see it online via PBS.org


    3. Hi
      I also took the 23&me test and I had 1 more marker than you. There are only a few combinations that give you a high risk, it sounds like you have 2 and I have 3 markers.
      When I took my test I already knew I had AMD and was being treated. So I thought this was remarkable since my mother had wet AMD which we think she got around 86. She also had Glaucoma beginning at age 40. I was diagnosed at age 57 with Glaucoma AND Wet macular degeneration in my right eye and dry AMD in my left eye.
      I would suggest you begin taking Preservision2 made by Bosch and Lomb. I began taking it right away and believe it has helped slow down the progression of both eye diseases. Read articles on this supplement and you will see it is the only govt approved supplement for AMD. The first Presservision was developed by Bosch but the results were so outstanding, the govt helped develop Presservision2. It is the only eye supplement given at Veterans hospitals.
      When I was first diagnosed with both diseases at the same time, the eye dr told me that I most likely would only have sight for 3-5 years. He told me very compassionately that I had a double whammy because Glaucoma takes peripheral vision and AMD takes central vision. They started injections for the wet AMD the day I was diagnosed. I must admit I had a few days of tears after realizing I could be blind in a few years. But, here I am now, 70 years old and I still have some sight. I am considered legally blind and had to give up driving 3-4 years ago, but with some aids I can still watch TV and use Uber to get around and other things I’ve mentioned on this group.
      I would suggest that you take the results of your 23&me to an ophthalmologist and ask him/her to please test your eyes for a baseline of where they stand now. Then go to this same ophthalmologist for annual checkups so they can catch it early (or hopefully not at all)☺️
      If you have any other questions you would like to ask I’d be glad to answer those that I can. If you would like to know the exact genes I can look those up and let you know.
      I know people tend not to believe 23 and me because it’s a commercial site, but I have my son who is 48, take the test to see if he had a high chance of getting AMD. His results came back showing that he did not have Even one of the markers for AMD.
      But Here’s what I did find interesting is that it showed he had a high chance of Alzheimer’s disease but mine showed I had no chance of Alzheimer’s disease. My mother had Alzheimer’s and my sons father’s mother had Alzheimer’s. So he may have two sets of inherited genes for that disease. Ofcourse I pray that isn’t true.
      Sincerely
      Connie

      1. thanks for sharing your experience with genetic testing. I am glad to hear you are still able to
        function even though legally blind. My son has both glaucoma and early dry AMD. He takes the AREDS2 eye vitamins and I hope they help him. My doctor says there is no other formula proven to help slow the progression. It doesn’t help everyone but I have been stable for the past couple of years. Best wishes, Sharon Moore Advocate

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