Viv's Story
As a sufferer of wet Macular Degeneration I would like to share my story trusting that it will bring hope to others who have only recently been diagnosed with this life changing disease of the macula.
I am one of the very lucky sufferers who - in my opinion - miraculously regained my sight through treatment with the unfunded drug Lucentis, to the level that I have total independence once again.
Within a few short months from being diagnosed with wet Macular Degeneration, and having unsuccessfully been treated with injections of the drug Avastin, I heard the devastating words that so many sufferers will be familiar with "your sight is irretrievable".
What had been my very organized and busy world fell apart as I struggled to come to terms with this prognosis. I had suddenly lost my independence and could no longer drive, read a newspaper, identify faces or safely manipulate my way around. My husband moved into the role of chauffeur, chief cook and bottle washer and close colleagues at work aware of my condition closed ranks to assist and support me where possible in my busy role as a Personal Assistant in the School of Population Health at Auckland University.
We put our Half Moon Bay Auckland house on the market as it was suggested I take early retirement and move away from the city environment to our beach house in the less populated area of Mt Maunganui where I could familiarize myself with the surroundings before I became completely blind.
It was then I was given the very sound advice to seek a second opinion - and if I was not happy with that, then to seek a third.
In December 2007 I reluctantly made an appointment with a highly recommended Retina Specialist - I say reluctantly, for after all I had been told that my sight was irretrievable - and this decision was to change my life and future completely. The Specialist recommended I undertake a course of four injections of Lucentis, a drug not funded in New Zealand but specifically designed for the treatment of wet macular degeneration (it is funded in UK, Australia and Canada). The four injections of Lucentis cost approximately $10,000 and luckily we were able to draw on our retirement fund to pay for this. Following the 4th injection in March 2008 I had completely regained the sight in my right eye and thus regained total independence, once more able to drive, read and live life normally. To me this was indeed a miracle.
I have an essential eye check monthly with my Specialist and the need for this was apparent as in August 2009 the scan showed a small leakage in the right eye which was immediately treated with an injection of Lucentis, and my level of sight has been maintained.
Following my own experience of the lack of awareness of this life changing disease Macular Degeneration, the treatment available, and the enormous impact it can have on your life, my husband and I are conscious of the need to educate in the broadest sense the general public of New Zealand and bring this to the attention of the medical profession in general and more specifically to the Ministry of Health. The Ministry must be aware that Macular Degeneration is the major cause of blindness in the over 50s in New Zealand and therefore if it is conscious of saving money in the long run must fund Lucentis and similar eye specific drugs in its short term policies.
As a sufferer of wet Macular Degeneration I would like to share my story trusting that it will bring hope to others who have only recently been diagnosed with this life changing disease of the macula.
I am one of the very lucky sufferers who - in my opinion - miraculously regained my sight through treatment with the unfunded drug Lucentis, to the level that I have total independence once again.
Within a few short months from being diagnosed with wet Macular Degeneration, and having unsuccessfully been treated with injections of the drug Avastin, I heard the devastating words that so many sufferers will be familiar with "your sight is irretrievable".
What had been my very organized and busy world fell apart as I struggled to come to terms with this prognosis. I had suddenly lost my independence and could no longer drive, read a newspaper, identify faces or safely manipulate my way around. My husband moved into the role of chauffeur, chief cook and bottle washer and close colleagues at work aware of my condition closed ranks to assist and support me where possible in my busy role as a Personal Assistant in the School of Population Health at Auckland University.
We put our Half Moon Bay Auckland house on the market as it was suggested I take early retirement and move away from the city environment to our beach house in the less populated area of Mt Maunganui where I could familiarize myself with the surroundings before I became completely blind.
It was then I was given the very sound advice to seek a second opinion - and if I was not happy with that, then to seek a third.
In December 2007 I reluctantly made an appointment with a highly recommended Retina Specialist - I say reluctantly, for after all I had been told that my sight was irretrievable - and this decision was to change my life and future completely. The Specialist recommended I undertake a course of four injections of Lucentis, a drug not funded in New Zealand but specifically designed for the treatment of wet macular degeneration (it is funded in UK, Australia and Canada). The four injections of Lucentis cost approximately $10,000 and luckily we were able to draw on our retirement fund to pay for this. Following the 4th injection in March 2008 I had completely regained the sight in my right eye and thus regained total independence, once more able to drive, read and live life normally. To me this was indeed a miracle.
I have an essential eye check monthly with my Specialist and the need for this was apparent as in August 2009 the scan showed a small leakage in the right eye which was immediately treated with an injection of Lucentis, and my level of sight has been maintained.
Following my own experience of the lack of awareness of this life changing disease Macular Degeneration, the treatment available, and the enormous impact it can have on your life, my husband and I are conscious of the need to educate in the broadest sense the general public of New Zealand and bring this to the attention of the medical profession in general and more specifically to the Ministry of Health. The Ministry must be aware that Macular Degeneration is the major cause of blindness in the over 50s in New Zealand and therefore if it is conscious of saving money in the long run must fund Lucentis and similar eye specific drugs in its short term policies.