So I’m writing this post with just my right eye open, because my left eye has developed another retinal blister. “Ew”, you say. I agree. Ew indeed. This is all part and parcel of a retinal disease known as (Age related) Macular Degeneration, a degenerative retinal disease that I was diagnosed with several years ago (as most of you are likely aware1). I affectionately refer to it as MacD, but the bio-nerds researching it usually call it AMD (for Age related Macular Degeneration). Of course, what I have is not age related, as the age in age related generally implies someone in their 70s or 80s. In my case, the doctors think it is a genetic condition, but we aren’t aware of anyone else in my family that has it or has had it. Perhaps relatives that would have developed it died too early for us to know?
Anyway, while the long-term prognosis isn’t good (i.e., the doctors expect that I will be blind by my early 40s), today I read an article which offered some hope to those that suffer with MacD2. It can be found here. The gist of the article: healthy eyes break down a type of RNA molecule that is toxic to the retinal cells, whereas unhealthy eyes (i.e., eyes like mine) do not. This finding offers hope because it provides researchers with something to aim for. That is, if they can stop the toxic RNA from doing what it does to the retinal cells, they can prolong vision in those with the disease. The article does mention 2 promising therapies, but clinical trials will not begin until the end of the year.
If you are wondering what MacD is like, here are some sample pictures that I pilfered from a site that I visit frequently (as it has an Amsler Grid that I use to test my vision):
Healthy eyes would see the girl like this.
AMD eyes might see her blurred (I experience this).
AMD eyes might see her distorted. (I also experience this, especially when I have blisters).
Advanced AMD. (I do not, thankfully, experience this as of yet).
Now, because of the disease and my rather nerdy ways, I like to track the degeneration as best I can. To do this, I use an iPhone application called EyeXam (yes, there’s even an App for that!). It’s pretty cool, and will test other vision issues such as astigmatism or colour blindness. It’s free, so if you have an iPhone, download it and check it out. Eye health is important. Anyway, I find both the tests and the disease all very cool, in a completely nerdy and science-y kind of way. I especially like the app because it includes an interactive Amsler Grid. The grid itself looks like a normal sheet of graph paper, which is how healthy eyes would see it. MacD eyes see distorted or bent lines, or blurred areas. They may also not be able to see the corners of the grid when it is held at the correct testing distance. I see both blurred spots and distortions, and I have issue seeing the upper left corner.
Getting back to the application; the interactive part of the interactive Amsler Grid is such that the app allows me to draw where I see distortions or blurred vision. So, as of right now, I see major distortions (worse than those illustrated by the third picture of the girl above) where I’ve drawn the red blob:
This is just my left eye at the moment. My right eye is functioning normally.
The blister(s) causing the distortion can last for minutes, hours, days, and in some cases weeks or months. At times they can be hilarious, especially when they distort what I’m viewing into a tiny point. Imagine looking at someones face, but with a fun house mirror filter over your mirror. A fun house mirror that just so happens to squish all of your face into a tiny point. Hilarity for sure. Of course, the blisters can also be very annoying, especially if I’m trying to read or write. But I’ve learned to work around them, or in certain cases, I just go to bed or pour myself another glass of wine. LOL.
I also purposely bought HUGE sunglasses this summer, as a result of the MacD. Well, huge for me. The idea: to protect my eyes as much as I can, as sunlight is apparently not a friend to my retinas. To be honest, I wasn’t comfortable buying glasses this large because I felt they were too big for me, and made me look like an alien or a bug. I have always been partial to smaller glasses, so this was out of my comfort zone in a huge way. But I’m not one who runs away from discomfort, so I bought them, and after wearing them for a while now, I’ve grown to love them and am very happy with my purchase. And I think I look like hot shit in them. LOL.
Me, with Elliot the cat (who just happens to be the most amazing cat ever) and my big sunglasses. For the record, I do not have a cat. Elliot belongs to my friend Jamie.
Anyway, I will no doubt post more about this condition, or any adventures that occur as a result of it. I mean, if I do anything like footnote 3 or 4 listed below (again), clearly I have to let you know
1 I’ve also been diagnosed with several other retinal problems: Central serous chorioretinopathy, dominant drusen, and something called Sick Retinal Pigment Epithelium. I also have a lot of floaters, which as I understand, are caused by my eyes bleeding. Awesome. It’s like my eyes are having a giant unprotected orgy, and my retinas are clearly picking up every disease possible. Despite the slew of conditions, they are all, according to my docs, related to the overarching diagnosis of MacD. Hence, I just say MacD when queried about my peepers. It’s easier that way.
2 Note, I don’t feel that I suffer from this, per se. I mean, my vision is still relatively good compared to others that have the disease. I can still function without any sort of assistance, and my life has been relatively unaffected. That’s not to say I haven’t modified some behaviours: I don’t bike at night (as my night vision is terrible3); I often wear sunglasses whenever I’m in a car at night, because the oncoming traffic blinds me; and the magnifying function on my MacBook Pro is my best friend. But, I can still manage to work, and post to my blog. Clearly it’s not that bad
3 For example, I may or may not have, during an evening ride, biked into a car. That was parked. Multiple times4.
4 My biking into things is not limited to the eve. A few summers back, I was biking with my brother through Preservation Park in Guelph. I managed to bike into a tree. Twice. This particular tree just happened to have been covered somehow with poison ivy, or poison oak. And I may have ended up looking like this.
This is not, I repeat not herpes. It is either poison ivy or poison oak.
Clearly the tree was out to get me.
Follow up: I wrote this post last night but am only now getting around to posting it. In that time, the blister has decreased in size, so I do not have to work with just one eye anymore. I find this a bit sad on some level, as I had been hoping to attend my Monday meetings as a pirate. Argggggh!