When articles appear in the media about AMD or other such conditions affecting the macula, the picture tends to be blurred with a dark spot right in the centre. Personally I don't see things like that, yes, the central area is a blind spot, but for me, rather than a blacked out area, the 'blind spot' takes on the colour of the background, added to which, there is a constant flickering halo around it; however, my peripheral vision is clear, so by constantly looking in different directions, thereby moving the blind spot above, below or to either side of what I'm trying to look at, I am able to see what is there, this process is called 'eccentric viewing' but it seems to do the trick!
The following sequence of pictures shows one normal (I assume this is how people with good vision will see it), the next shows the same picture, rather overexposed, which is how things seem to me in bright sunlight. The next two photos have the blind spot overlaid, the first show what it's like trying to look directly at an object and the fourth looking off-centre, to stop the bind spot obscuring the object, enabling it to be piked up by the peripheral vision. I don't know if others who cope with the condition see in the same way, but this is the closest to how I see. things.
I can't deny that having this condition isn't frustrating. Not being able to pick up a book or magazine and settle down for a quiet read, is a nuisance, as is not being able to watch the TV clearly and of course, having to hang up the car keys five years ago took away a lot of independence; but stepping back to take a more pragmatic view (excuse the pun!), there are many others who are contending with a lot worse. So, it’s important to look for positives and rather than focusing on things I can’t do any longer, to focus on those I can; and in this modern technological age there are a lot!
Like other degenerative eye diseases, Best Diseases is not life threatening. As I was diagnosed with it in childhood, I’ve grown up with it and not knowing anything different and I've been able to adapt; it’s impaired vision, not complete blindness and the advances in technology and research provide help and hope of a cure.
In my case the condition is advanced, as can be seen in the photos below, and the damage to the light receptive rods and cones is currently irreversible; however, the possible cause of the problem has been isolated to the retinal pigment epithelium (RPE) cellular layer at the back of the eye and the advancement in stem cell research is a very positive step. If this layer can be repaired at an early stage, and before light receptive cells are damaged, it could prove to be an effective cure.
As this condition is a genetic disorder it can be passed down the generations and, unlike AMD, it affects children in their early years; it has been detected in some as young as three years old. This is seen as an abnormality of the macular, but it doesn't necessarily mean the light receptive cells (rods and cones) are damaged at that point, or at least not extensively . The hope is that if the RPE layer can be replaced, so it works properly, then further damage can be prevented.. At present my condition can't be reversed, but if the positive results from the stem cell research programme can be maintained, it may soon be possible to prevent the condition worsening for these youngsters.
Below are three Optical Coherence Tomography (OCT) scans showing cross sections of the macular. As detailed, the first scan is included for reference purposes and shows what a healthy eye looks like. The other two.., well, they sort of speak for themselves!!!
Thank you to SpecSavers, Market Square, St Peter Port, Guernsey for providing the photos and scans of my eyes.