Learning to see again - Help for the newly diagnosed

Newly appointed foundation director, Kristine O'Brien shares her vision story and advice for the newly diagnosed. 

Sixteen years ago I started to have problems reading. Every few days I was experiencing something like blind spots in my vision, and to read a line of numbers was impossible. I was diagnosed with Juvenile Dry Macular Degeneration (Stargardt’s Disease), and was told that there was no cure. I could not drive again, my career in finance had to change, and I had to learn to see out of my peripheral vision.

I have experienced many confronting and challenging situations, but as time has passed, I have become stronger and less sensitive to others that are usually unaware, or uneducated on low vision and blindness.

Sometimes people will ask me about my eyesight, and why I don’t wear prescription glasses, have laser surgery or why I am using a monocular! ( a visual aid to see distance, like a half binocular). They are then shocked to find out that actually what I have cannot be “fixed”. I talk a little about Macular Degeneration and how it is a very real concern as we all get older. I sadly often receive a response of “I had no idea, I have never heard of Macular Degeneration”.

The current statistics show one in seven Australians over the age of 50 years have some evidence of Macular Degeneration. (source; mdfoundation.com.au)

Over the years I have visited many Low Vision and Blind clinics both here in Australia, and around the world. A very wise lady, the late, Dr Lorraine Marchi of the National Association for Visually Handicapped in New York said to me on our very first meeting “Kristine, you must use it or lose it”. This meant that you need to keep using your eyesight even after diagnosis as much as possible or you will lose it.

No matter what eye condition you have, it is very important to try as many low vision aids, tools and magnification devices as you can until you find the right one to help with that task that has become challenging.

If you'd like to read more of my hints and tips on staying independent in and around NSW please feel free to visit my website independentvision.com

Why you should come and SEE how your eyes are going

Regular eye examinations are important for everyone, even those with a known diagnosis. Written by Chris Pooley.


The journey of a genetic eye disease sufferer typically begins with frequent visits to an optometrist and ophthalmologist however, once a diagnosis is made, many patients often avoid important follow-up examinations that can contribute to significant improvement in quality of life and treatment.    

While it can be understandably difficult to be reminded that you are visually impaired, ongoing eye examinations allow for changes in a condition to be detected and appropriately managed. This may include updating a glasses prescription, a referral to a low vision service, or medical and surgical treatment.

An eye examination also provides the chance for a patient to learn of any advances in research or technology.  The advent of a new low vision device may mean a patient can perform certain tasks with greater ease than before. Even being re-trained in using a current low vision device can improve one’s quality of life. 

These reviews can also detect eye conditions that occur independently of genetic eye disease.  The earlier such conditions are detected, the greater chance of successful management and treatment.

Are you unsure as who best to SEE about your genetic eye disease? If so, contact the Look for Life foundation through this website or our Facebook group and we will put you in touch with a local eye care professional.