Age related onset dry Maccular: I have... - Macular Society

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Age related onset dry Maccular

Fatherofthebride
Fatherofthebride

I have recently been diagnosed with age related Dry Maccular decease and unfortunately I’m having trouble coming to terms with the possible outcomes of failing eyesight!!! It’s the may or may not deterioration which I find difficult to sort out and at the moment I can’t think of much else - especially before I go to sleep at night!! Is there anybody in this group that I could correspond with who could reason with me so that I can come to terms with this blow to my health!! At the moment my usual positive way of thinking doesn’t feel too positive.. I am a very healthy 72 year old.

Thank you for listening.

Annie

20 Replies
Hidden
Hidden

Hi there

First of all, take a deep breath and slow down. There is really no need to panic. I know it is always a shock to be diagnosed. We have all been there and know exactly what you are going through. But remember that only 10 to 15% percent of people with dry AMD go on to develop wet AMD. I was diagnosed with dry AMD in both eyes about two and a half over 2 years ago. True, my L eye turned to wet shortly after original diagnosis for which I receive treatment. My R eye is still dry and has changed very little. I can still read and carry on with my life as before. So you see, you are not likely to lose your sight over night. If the worst came to the worst, the treatment for wet AMD works well for most people and there is even better treatment on the horizon.

You say you are healthy and usually positive. Well don't jeopardise your health by whittling and losing sleep about something that may never happen. Enjoy what you have today. Tomorrow is always another day. If you need to talk more about your anxieties, we on this forum are always here to listen and help if we can. You may want to click on "Chat" above for more personal and private contact.

And when you go to bed tonight think about what I said. Maybe take a book to read. I usually fall asleep before I have turned 2 pages. Sending you a big hug. ayayay

Fatherofthebride
Fatherofthebride in reply to Hidden

ayaya

Although it was 10 years ago, I well remember my dismay when the dry AMD turned wet. My very considerable fear for the future proved to be exaggerated. I do miss being able to drive but with some magnification do everything else.

When I complained, it was suggested that I "Just get on with it". It proved to be valuable advice.

Best regards

David

PS In my haste to be reassuring, I failed to mention my very many Lucentis injections which continue to enable my (one eyed) vision.

Sending you a hug x diagnosis is always such a shock. I cried myself to sleep every night the first two weeks with the thought of losing sight. Vision problems are known to be akin to bereavement emotionally so be kind to yourself x

Contact the macular society via their website tel helpline - they have people you can talk to or email. They are fab. Everyone here is brill too, we all ' get it' and will support you. Once you have had a good cry and let some of the emotions go don't let the worry of an unknown tomorrow spoil the beauty of today - you've gotten to this age having got past other things and you can cope with this too!

Reading is my escape and pleasure and helps me cope and even if that becomes hard there is technology to help.

Good advice from Ayayay and david. Wishing you all the best going forward x

Thank you I am so pleased to hear from all of you I am fit and healthy so feel so grateful for that

Good advice from ayayay as always. I also felt devastated when told this year at age 64 I have wet MD in my right eye. Also I am subject to infections from blepharitis which doesn't help and is causing me a lot of concern but you will find that the people on this forum are all very caring and supportive. You may well find that you won't develop the wet form and I believe that dry AMD is much slower at affecting your sight.

Try to stay positive and keep busy and remember you are not alone.

Thank you so much I feel a lot better now

Hi,

It is several years since I was told I had dry AMD and there has been only small changes. I am having effective injections which. although used for AMD, are for a different eye problem in my case. Good advice from everyone here- don't worry about something which may only progress very, very slowly.

Again I’m very grateful to you all on this site thank you

The first thing I did when I got diagnosed with wet AMB in one eye was to search on this group and learn all about it. I soon realised that if it got worse and the treatment didn't work (worse case scenario) was that I would only loose the central part of the sight in that eye and all the outer sight would still be there. Fortunately the injections of Eylea worked for me and stopped it getting any worse, in fact it actually improved a bit. I just have an small injection every 2 months now to keep it under control.

I would certainly advise you ring the helpline on here and have a chat to them; they will put your mind at rest if you are that concerned. Don't loose sleep over it; that will just make your health worse.

I am similar to your age by the way at 74, and before this came along I had 6:6 vision (still have in the good eye) and now have 6:7 in the bad eye which is not too bad.

Thank you Mike much appreciated

I don't have an answer to your specific question. However do have your eye checked regularly because dry does become wet sometimes which is treatable.

I wonder who told you it is dry? If not the eye clinic I would ask for a referral

Steven

Hi Annie, I also have dry AMD and was devastated when they told me there was nothing to do at the moment. But do not despair, I read that there is a study right now going on in Toronto with many persons as guinea pigs, (of course) trying LLT (Low laser technology) with results. It originated in France since last December. So I am hopeful and praying that it will be available to us in the near future. One thing that keeps me positive is that my Opthalmologist says I will not go blind. Keep busy as much as you can. This takes lots of courage and good luck friend!!

Ayayay expresses my feelings eloquently.

I was diagnosed with dry AMD at age 55, and cried constantly thinking life was over as I knew it. I found the right Dr who had a more optimistic point of view.

I too am exceptionally healthy otherwise.

Ten years later my right eye turned to wet AMD and I have had monthly injections for three years.

That fact has not stopped me from studying; the piano, a foreign language, photography, courses on line, reading and driving. Doing things that make me happy. Worrying is wasted energy.

My philosophy, “That which does not kill us, makes us stronger.”

Hi Melene thank you for filling me in on your life experiences I'm so impressed listening to all you lovely positive people and I'm taking life daily carrying on with everything as normal - I feel loads better knowing I'm not in my own out there Annie

Rosalyn-helpline
Rosalyn-helplineAdministrator

Dear Fatherofthebride,

Please do not hesitate to contact us at the Macular Society Advice and Information service. We are open 9am – 5pm Monday to Friday on 0300 3030 111.

Alternately, you can contact us via:

help@macularsociety.org

Kind regards,

Thank you Roslyn will do I’ve already been in touch and they have sent me loads of information to read up on Annie

Thank you for bringing up this issue , I had dry macula for 10 years and then suddenly I developed wet macula in one eye and a year later on the other eye. I have been on Eylea since March of 2016 and at first the doctor even used the laser once but it did not help me. I had been taking Eylea every two months but just last month my right eye developed more fluid and the doctor wants to star monthly Eylea instead. I have no vision loss yet but this month the fluid of Eylea seemed to linger for a week and I could see a grey disc that blocked my vision and I felt like you scared of losing my vision but that was yesterday, today that shadow is gone and the fluid is gone. Vision is so important that we panic, but thanks to you and the wonderful members in this site, I have realized that this is not the time to make myself despair. Thanks to all the participants,

In time, you will be able to overcome the feeling. I've gone through it when I was diagnosed with AS last year and I am only 34. For the first two weeks, I couldn't think of anything else except my bleak future. 3 injections later, I learned to get on with life.

After one year, things are back to normal for me. I do have to visit eye hospital every 3 months, but that's about it.

If I can get over the fear and anxiety, I am pretty sure you will be able to. The feeling is temporary and you will get over it.

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