I was first diagnosed with Macular Degeneration aged 57 in 2004, two years after treatment for breast cancer ( no connection: it just feels as if this was the point of sliding into old age). For both, I was considered to be on the young side.
MD (Macular Degeneration) has two varieties, wet and dry; there is a clinical treatment for wet, which must happen immediately that it is noticed. There is currently no clinical treatment for dry MD but there will be soon. There are several juvenile forms, genetically inherited. The most common, age-related MD (known as AMD) affects some 20% of the population over 75. It is the most common cause of blindness in this age group.
My first trip to the eye clinic followed a traditional pattern. I was seen by a doctor on his first day at this clinic. Seeing my scan, he informed me that I had AMD and that there was nothing that could be done. I was on my own and left the hospital in tears.
I knew exactly what AMD was. My father, an avid bird-watcher and horse racing fan, had it. In his 80s he used to sit with his nose right up to the television to watch the racing.
However, I soon recovered my composure and became instead angry at the way the news of my MD had been presented. I returned to the GP demanding a second consultation. This time I was seen by the consultant himself, who dealt with the diagnosis much more sympathetically. He was not sure that the scan revealed MD for sure, although there were abnormalities on my right retina. He referred me to a new retina consultant at The Royal Berks. Hospital.
By now it was September. I saw the consultant in RBH. She said that I showed signs of wet MD and needed treatment immediately. At that time, this was laser treatment (PDH) straight onto the affected site. This was done there and then. I had two further laser treatments, at three monthly intervals. I did not regain the central vision in my right eye. Instead, I have been left with a scar in the middle of the retina, the part known as the macula, about 2mm in diameter which does all the fine focussing and precise colour recognition. You are left with a ring of peripheral vision, which can still be very useful for seeing, for spatial awareness. This part can be trained to read text (magnified) and be useful in a general way (more of that later).
I had been in touch with the Macular Society by then (at that time it was still called Macular Disease Society). This is a most helpful organisation. It has grown enormously since I joined in 2004, when there were just four paid staff members. It now has at least 45 staff and has moved to bigger premises, still in Andover, still extremely accessible to MD sufferers, members and non-members alike. It is still small enough to provide real communication at a personal level and it still regards members and volunteers as its centre. The staff are there to support us.
It has been of tremendous help to me. I now act as volunteer in various roles: speaker, newsletter distributor, telephone friend ( to sufferers who are isolated) and Skills-for-Seeing trainer – helping sufferers make the most of their remaining vision.
Regarding my current level of eye sight: I can still read under good lighting but glare is a big problem ( I wear strong filtered sunglasses and a hat in strong sunshine) and I have difficulty recognising people. I gave up driving before it became an issue but I remain fairly active.
If you know anyone whose sight has been affected by Macular Disease please tell them about the Macular Society‘s monthly local support groups in Newbury, Swindon & Marlborough. If you want to support the groups in any way, please contact Tom McInulty at the Macular Society on 01264 321 963. To find out how Macular Disease can affects your sight watch this short video on the Macular Society website.
Bonnie Hildred
