Diagnosed with Dry AMD at age 44

by Lynne
(Ohio)

I was diagnosed with Dry AMD in February 2011. I have it in both eyes and it has progressed from a few small drusen to extensive drusen in 1 1/2 years.

I have no family history of it, and do not have many factors that contribute to it. My ophthamologist is at a loss why it has progressed so rapidly. I saw a retina specialist, and he also has no explanation. They both tell me I am too young to have it progressed to this stage.

I was also diagnosed with early cataracts at my last visit. I have been trying to "accept and adapt", but it's not easy.

I have to smile reading some of your stories. I also have been in a frenzy the last year trying to accomplish all my projects I wanted to get done. I had to give up working 6 months ago because I was unable to read forms or work on computer for long periods.

I don't drive at night, when it's raining, or on busy highways. I've found that people don't understand dry macular degeneration because I am physically able to do many things, they just don't understand the frustration of trying to set the dial on your stove or thread a needle or try to read labels at the grocery store!

My biggest question is how bad will my vision get and how long will it take? Since I was diagnosed at a younger age, what will my vision be like when I'm 60? In the meantime I am trying to adapt as well as I can. I use sunglasses or a hat when outside, and found that transition lenses really help on my prescription eyeglasses. I also use a magnifying lamp and increase the font on my computer. If anyone has any insight on what to expect in next 5 to 10 years, I would really appreciate it.

Only 43 with Intermediate Dry Macular Degeneration

by Brian
(Carlton, WA)

Well, just went in for a typical eye exam. The picture of my right eye looked almost identical to the poster on the wall of macular degeneration.

My left eye had a few spots but nowhere near as many as my right. I am in good health, good weight, excercise regularly, and eat well.

There is no history of macular degeneration in either side of my family. Needless to say I am devastated. I have begun a vitamin and Omega 3 program but am not hopeful.

Don't know what else I can do at this point. Open to any suggestions. Don't feel hopeful with my relatively early age.

Dry Macular Degeneration at 46

by Tina
(Bath UK)

Pictures of my eyes taken at the optician

I recently had an eye test and was referred to a local eye hospital where I had a eye scan. I was told that I have dry macular degeneration.

I am in shock as there is no cure for this . All they told me to do was to take ICaps vitamins for my eyes and to eat plenty of foods high in lutein.

I was also told to come back in two months for another scan. I was so upset so I did research and got in touch with the Macular Degeneration Society. They where wonderful and sent me an information pack with lots of help. The one thing they can not tell me is how long I have before my eyes deteriorate . I am really upset to have macular degeneration at my age. Tinax

REPLY

Tinax,

Thanks for taking the time to write your story and for sharing how much the Macular Degeneration Society has helped you. They also offer support groups all over the UK providing support and practical help to people with macular degeneration.

For those of you who live in the UK you can contact their Helpline on 0845 241 2041 or email help@maculardisease.org.

Leslie Degner, RN, BSN

AGE 49, EARLY ONSET AMD AND AUTOIMMUNE DISEASE

by Rebecca
(Jacksonville, Florida )

I am 49 and currently legally blind (20/200) in my right eye due to chronic macular edema.

I was a very high myope from birth (-12) in both eyes. I had Radial Keratotomy in 1980 on both eyes. My vision was improved to 20/30 uncorrected in both eyes, although I was negative in the right eye and plus in the left.

I have enjoyed fairly good vision with normal age changes for 25 years. Two years ago, I rapidly lost my night vision and developed marked dry AMD in both eyes. Six months ago, my dry AMD in my right eye morphed to wet AMD suddenly.

I have lost my fine detail vision and have no useful vision at all in my right eye.

Since January 2010, I have had six Avastin injections, one steroid injection and one cold laser/Avastin treatment. The swelling improves for a day or two, then regresses back to no useful vision except for light and motion detection only.

My retinal specialist states that it appears that my condition is from the congenital abnormalities of my eye structure and is probably irreversible.

I am 20/40 (variable) corrected in my left eye, with mild cataracts and drusen, mild dry AMD. I am worried that my left eye will follow the sudden disease progression of my right eye and that I will be completely legally blind and lose my independence in the near future.

So far, I have lost my ability to drive at night or in low visibility and must use some assistance tools to read. I cannot see faces across a room.

Working on a computer or reading for any length of time is very difficult as I have focusing problems and get headaches.

I was also diagnosed with several auto immune diseases last year and am taking aspirin, NSAIDS and an immuno-suppressant drug (Imuran).

My doctors do not think there is a link between my UCTD (lupus like) and the sudden onset of my eye problems. However, it seems coincidental that the macular edema came on so suddenly 3 months after starting the "big gun" Imuran.

I would like to receive feedback from other pathological myopia/wet AMD patients and Auto Immune disease patients who use immuno-suppressant drugs and have macular edema.

I would also welcome any input from retinal specialists.

"I am only getting old"

by Jutta
(Tasmania)

Dear Leslie and everybody else,

During the last year I have spent quite a lot of time reading your stories and information on this webside and found lots of interesting bits. Sometimes I could relate to stories very well and wanted to answer but I found it very difficult to write something 'helpful'.

I was a bit surprised to read that this website does not come up in google search anymore and hope I can support you, Leslie, by telling my story now anyway:

Last year I (46)went to my optometrist because I lost my glasses at the beach, not because I had problems with my eyes. We did the usual eye test. After testing the same thing over and over again, he said that I refused to tell him all the numbers/letters on the board. I only saw 4 out of 5 signs. The middle was missing. After making more tests he told me that I had the first signs of dry macular degeneration and that there is nothing he can do.

He kept repeating that it has something to do with healthy food. This surprised me a bit because I always thought I am cooking very healthy. I have children who constantly complain that they miss out on junk food and I have a partner with a health problem, which is the reason that I cook fat free and lots of vegetables etc. So I asked if I should go to a GP for a check up and the optomerist agreed to this, but also said I should google macular degeneration to get more information.

As I was working as a sewing/embroidering machine operator my sight is really important for me. So I started hopping around on internet pages, doing different eyetests and getting all sorts of information, which was mostly - scary...
I did suddenly realise that I couldn't see all the lines I was supposed to cut or sew. I did also remember that years ago letters of small prints started jumping in front of my eyes. (Back then my optomerist said, I just wasn't concentrating) and I also did get a bit impatient reading about people who are twice as old as me and getting blind.... sorry, but I thought, that is just not me.

So I called the GP for a general health check.
The results of a blood test were all 'very good' and 'no problem at all', so the doctor laughed at me. "you are only getting old, it is normal to have problems at your age".

I asked her if she is pulling my leg and if she could refer me to a specialist, which she did.
The specialist - who did not laugh - told me I am imagining things. "I know the signs of AMD and you certainly don't have this" is what he said.

I told him what the optomerist said and asked him to check again. This second check seemed to change the doctors mind a bit and he said there might be a tiny problem, but nothing to worry about, sent me back to the GP, who is still smiling and telling me all about getting old. "We all use bits and pieces, some move slower, some use their eyesight, .... and you won't need that much sleep anymore, have you realised that?"

Honestly, I would appreciate to sleep less and have more time to do things, but as things happen, I am usually tired very early in the evening after extremely busy days. And yes I had times when I was very stressed and spend more time in bed reading and eating chocolate than anything else. But this is now appr. 2 years ago.

And I started bicycling regularly, running daily and looking after my health a bit more. So I did not agree with what the doctor said. Also, my eyes were still good enough to read on her computer what the specialist wrote to her, which was "Yes, there are signs of AMD, but due to her age treatment is not recommended" Does that mean, I am too old or too young for treatment?

At this point I stopped to bother about doctors, started to rearrange my eating plan. I eat everything which is on the list 'anti infamatory' and added some pills to my menue (fish oil and vitamins) which are supposed to help with macular degeneration.

I resigned my job because I spent most of the time comparing lines and not being able to sew straight anymore. I went to a school for a while and got to know a teacher who said, she knows about macular degeneration and she can help me with sewing. So we worked out together which bits of the material I could not see.

I bought a brighter light which helps a lot. I also use magnetic sewing guides so that I don't have to look for lines and needles which I can't see, but pull the material alongside the magnets, which I can see.

So for now I am working self employed (I received my first orders for fixing a couch and designing/sewing a work uniform). And today I will write an application for an embroidery position in another company. This time I will bring my own light and my magnetic guides and all the other bits and pieces I need to help me doing my job...

And although it is scary not to have 'proper medical support' all the people who wrote their story on this website and all the information Leslie delivered is helping a lot.

Thanks

Jutta

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