Patient Stories

Helping through personal experience

Below are real life stories from patients with Macular Degeneration.  We hope their experiences can benefit you.

If you have something you would like to share please email us at info@macularhope.org

 

Linda … I was diagnosed about seven years ago at age 52. I’ve written about my experience and will share a link to one article at the end of this comment. My disease has progressed. I am now legally blind in the right eye and 20/70 in the left. I am fiercely independent and must admit that I am frightened about the loss of independence. But, I am grateful for the advocacy of MDA in helping educate the public and for the resource they provide for those of us living with AMD. http://lrc7815.hubpages.com/…/Macular-Degeneration-The…

  

Jen … I was diagnosed at 28 with genetic dry MD – bit of a bummer for a professional artist (painter) – but I am gradually learning to embrace the changes to my eyesight in my work (by becoming kore abstract and expressive), although the lifestyle changes are harder to accept, such as not being able to drive in the future, etc.

 

Michelle … I am 46 and was just diagnosed in May. My grandmother and her sister had it (both deceased now, but would have been 93 and 104). The Amsler is wavy, blurry, and looking like it’s trying to cone with dot moving away from me. Contrast is a must. For example, if I put my black phone face down on my black laptop, I then can’t find my phone. I eat what the eye doctor recommends, take vitamins, and I wear amber lens shooting glasses when I go out. Those glasses really come in handy when driving during torrential Orlando thunderstorms. However, they still don’t help me read street signs that are more than one lane to the left of me. I have already read Daniel L. Roberts’ The First Year: Age-Related Macular Degeneration: An Essential Guide for the Newly Diagnosed, and I am currently reading Lylas and Marja Mogk’s Macular Degeneration: The Complete Guide to Saving and Maximizing Your Sight.

 

Melissa … I was diagnosed in my early fifties. My moms six brothers and sisters are dealing with it but theirs didn’t hit till late sixties on or later. I have seen what they been thru. I dread it. I don’t know how you can actually prepare for what’s ahead.

 

Patricia … I was diagnosed with macular degeneration in both of my eyes (enfermedad de best) at 32. That was 2 yrs ago. And I am starting to loose my sight and seeing black spots or dots, is really sad to me. I am a photographer and having dificulty to focus my lenses and all that is so….I don’t even have words… Don’t want to become blind and I know so far there is no cure.

 

Debra … I was diagnosed five years ago, already legally blind in my right eye then. I have myopic MD and have learned to cope as things have progressed. I’m blessed to have alot of non-smothering support. I still do many things independently despite bilateral 20/400 vision. Yes, it’s unfair but there is so much I can still do and a good attitude is key! I will be entering rehab soon to learn cane skills and braille with my goal being a career as a braille transcriptionist. Focus on CAN, not CAN’T! 

 

Angela … I was diagnosed with Macular Degeneration a few years ago at age 38. I had to change careers but luckily my progression has been slow due to a healthy lifestyle.

 

Kristen … I was diagnosed with wet AMD, 4 years ago at age 56, in my right eye. I just started my 5th round of Avastin injections. I see changes in the Amsler grid, before it shows up on the scan. I retired as an RN, when I was first diagnosed. It was essential in reducing my stress level, and my acuity was significantly decreased. I was diagnosed with glaucoma this summer, and I will have laser surgery this month. I have a hard time finding things. I am still training my husband to stop moving my “stuff”. I read with a Kindle, and I use an ott light for crocheting, which I am still able to do on “good days”. I fear losing my independence, and my drivers license. I was a visiting nurse for decades, and feel quite at home behind the wheel:) I agree with Michelle about the contrast. A positive attitude is a must!

 

Suzanne … I was diagnosed 3 years ago at the age of 50 with early AMD. Now I am at the intermediate stage and still no symptoms. I would really like to read what others have done and even what they wish they had done to prepare for their vision loss. Thank you for posting this!!!

 

Cheryl … I was diagnosed with wet AMD in one eye and dry in the other at 41.

 

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