The macula is part of the retina at the back of the eye. It’s responsible for our central vision, colour vision and detail. The macula has a very high concentration of photoreceptor cells, which are the cells that detect light. They send signals to the brain which interprets them as images. The rest of the retina processes outside vision and peripheral vision.
The form of macular disease that I have is from my genetic condition: Rod cone dystrophy. 600,000 people are affected in the UK by age-related macular degeneration. Age-related macular degeneration (AMD) affects people over 60 but can happen earlier.
The second photo is close to what I can see. My vision is blurred, dark edges appear (A lot stronger than how it is shown in the photo), and there is a dark patch in the centre of my vision which the picture does not show. I find bright lights glaring and uncomfortable and find it very difficult to adapt when moving from dark to light environments and light to dark environments, as my eyes can take up to 15 minutes to adjust!!
Words disappear when I’m reading, and straight lines can appear distorted or bent. Gaps, dark spots, flashing lights and smudges appear in my vision. Sometimes objects might change shape, size or colour or seem to move or disappear.
The main risk factor is age, because cell regeneration reduces. This means you are more likely to develop the condition the older you get.
Another cause of the AMD is genetics. My condition ‘Rod cone dystrophy’ is a recessive genetic condition which led to macular degeneration as well.
A SMOKER IS 4 TIMES more likely to develop AMD than a non-smoker. Smoking damages blood vessels and the structure of the eye. I don’t think people realise the permanent damage that smoking can cause. You are probably aware that it can cause cancer. To me, and in my own opinion, Macular degeneration and the condition that I have (rod cone dystrophy) is cancer. as it’s a rare disease that can’t be treated. Believe me, if I didn’t have these conditions and was told that smoking is one of the main risk factors that cause macular degeneration, then I would be pretty stupid to smoke.
Remember you are 4 TIMES more likely to develop the condition if you are a smoker.
Living with macular degeneration means that I have to find equipment and help to adjust my everyday living to make it easier for me. Little things like having brighter lights in my room, brighter lights at uni, big screens that are able to zoom into text, talking equipment such as audiobooks, and using contrasting colours that help differentiate between objects and text make a BIG DIFFERENCE FOR ME. To write my blogs, I use a software called dragon. This clever piece of software types out everything i say, including punctuation.
Sometimes I really struggle with my reading, because the words jumble up like this, which causes for me to get headaches. I used to be able to read really thick books, but now I struggle as my condition has gradually gotten worse.
I’m a very creative person. I was really into my art and photography when I was younger. Now I find it hard to focus on small detail. Here are some of my works that I did when I was eight years old, just around the time I noticed my night blindness.
My last piece of artwork I did before turning to music were these pieces. These works are from my GCSE photography and art.
There are two types of AMD which is wet and dry. Dry AMD is a gradual deterioration of the macular. There is no treatment for this. It is developed over months and years.
Wet macular degeneration is I think slightly more serious. In this degeneration abnormal blood vessels grow into the macula. These leak blood or fluid which leads to scarring of the macular and rapid loss of central vision. It can develop very suddenly and there is treatment. It can only be treated if caught early. Drugs are injected into the eyes the stop the growth of abnormal blood vessels. If the macula is scarred significantly, the treatment cannot restore sight.
Charles Bonnet syndrome
some people with macular degeneration experience hallucinations called Charles Bonnet syndrome. I don’t have Charles Bonnet syndrome, but I do see some hallucinations sometimes when I’m walking in the dark. For example I see silhouettes of animals and dark shapes moving around, along with patterns, and basically things aren’t even there! I think this is a pretty cool view, because it inspires me in my lyrics writing, and that’s why my songs are so weird!
Here is an example of visual hallucination.
this is a normal response from the brain to sight loss, because fewer messages reach the brain, the visions can become hyperactive and create images things that aren’t there!
I recently got in touch with the macular society. They send me magazines every month, which is full of information about support groups, events and people’s stories. I’m so happy that something like this exists, because having a rare disease that no one close to me has can be a bit frustrating sometimes as I feel alone, but even with a condition like mine, there’s so much help out there, which is good to know! It’s so much easier to get through an illness when you talk to someone who knows EXACTLY how you feel.
My point is, If you suffer from an invisible illness there’s help out there, and remember there will always be someone who is feeling EXACTLY how you feel, so don’t be scared to express your story, and most importantly, let it inspire you. As you can see I do this through art, and have apparently always have done from a very young age!
And somehow, in some way maybe you’ve got to think… illness can be turned into something beautiful, even if you think it’s the most ugliest thing in your eyes.
You may think that the way I see is terrifying and ugly but…
In my eyes, I think it’s beautiful.
In my eyes, invisible illness is inspiring.
In my eyes, I wouldn’t change it for the world.
Because In my eyes, I wouldn’t have been the creative person I am today!
How do you see it in your eyes?