Viv's story

Viv

As a person affected by wet macular degeneration I would like to share my story……… In 2007, at the age of 63, four months after being diagnosed with advanced wet Macular Degeneration in my right eye, I learned that treatments with the drug Avastin had failed, that sight in my left eye was failing fast, & vision in my right eye was irretrievable. As a fiercely independent person, I was devastated to suddenly become totally dependent on others, no longer able to drive, read or identify the faces of those around me.

Despite huge family support, allied to that of colleagues & close friends, I struggled to come to terms with my loss of sight. We decided the only option was for me to take early retirement, put our home in Auckland on the market & move to our beach house in Mt Maunganui where, whilst some vision still remained, I could familiarize myself with our single storey home, short walk to the shops, doctors, dentists & my immediate local surroundings.

It was then, with all these decisions in place, I took the very sound advice to seek a 2nd opinion & thus in December 2008 met Ophthalmologist Dr Dianne Sharp, a recognised world authority on Macular Degeneration. It is very sobering that had I not taken a second opinion, I would have been registered blind 6 years ago.

Dianne Sharp explained there was an alternative drug to Avastin for treatment of wet Macular Degeneration called Lucentis, but not being funded by Government or Southern Cross Health Insurance, the overall personal cost of 4 treatments with the drug Lucentis, would be around $10,000. We decided there was no option but to go ahead with treatments of Lucentis as Dianne Sharp indicated this should at least hold my vision at its present level. In April 2008 after 4 monthly treatments of Lucentis my sight had not only stabilized, but improved to the level whereby from not being able to read 2 lines above the necessary driving line on the eye wall chart, I could read 4 lines below the driving line and could once again identify faces, read and drive, this regaining my total independence. Believe me when I say - this for me was indeed a "miracle".

With my own experience as someone who has Macular Degeneration, and having moved to Mt Maunganui where there are many retirees on fixed incomes, during those long four months of my treatments we had time to reflect and talk with Dianne Sharp, and realizing treatments with the drug Lucentis are actually just that – treatments not a cure it became evident that further recognition of Macular Degeneration was required by the public of NZ. To this end the Trust, Macular Degeneration New Zealand was formed. Along with other Trustees, and the huge support of our Ambassadors, all prominent New Zealanders, we have initiated and established a well balanced program bringing to the attention of Government, the medical profession and in fact all New Zealanders, awareness of Macular Degeneration and the serious impact this condition will have on New Zealand society over the next three decades.

As a person with the condition Macular Degeneration and as a Trustee of Macular Degeneration New Zealand it is my dream that through bringing awareness of the disease Macular Degeneration to all New Zealanders those in the autumn & twilight of their lives will seek immediate professional advice when they see any change in their eye sight and so continue, not only to smell the fragrance of the roses, but to see the beauty of each bloom.

Viv recently was featured on Central News as part of the Macular Degeneration Awareness Week.