November
10 - Keratoconus Day
*Originally posted November 10, 2018
Today
is Keratoconus Day.
What
does this strange sounding word have to do with a book blog? Simple - It is an
eye disease; and what could be more threatening to the day to day
happiness of an admitted bookworm than an eye disease?
I have Keratoconus. I will always wear strong glasses. I will always have some vision issues, and Lasik is not an option. I am one of the lucky ones though. I was diagnosed early enough to not have gone legally blind (it does not cause complete blindness, but can impair vision sufficiently enough to be considered legally blind) and/or require a cornea transplant. I was able to retain enough visual acuity to maintain my driver's license and most importantly, I am able to see my son's beautiful, smiling face. I did have to undergo a procedure called Corneal Collagen Cross Linking on my right eye, and expect that I may yet have to have the procedure on my left eye. Cross linking does not cure the disease, nor does it correct the damage already done by the disease. It merely halts progression of the disease. That is why early detection is so important.
In the early stage, keratoconus symptoms can include:
- mild blurring of vision
- slightly distorted vision, where straight lines look bent or wavy
- increased sensitivity to light and glare
- eye redness or swelling
Left: normal cornea; right: cornea with keratoconus.
In later stages, keratoconus symptoms often include:
- more blurry and distorted vision
- increased nearsightedness or astigmatism (when your eye cannot focus as well as it should). As a result, you may need new eyeglass prescriptions often.
- not being able to wear contact lenses. They may no longer fit properly and they are uncomfortable.
Keratoconus usually takes years to go from early to late stage. For some people, though, keratoconus can get worse quickly. The cornea can swell suddenly and start to scar. When the cornea has scar tissue, it loses its smoothness and becomes less clear. As a result, vision grows even more distorted and blurry.
Epidemiology estimates vary from 1 in 2000 to 1 in 500 people affected due to the symptoms so closely imitating astigmatism. Most will be diagnosed early in life (teen years), but some (like me) much later.
It
was when I had the cross-linking done that I fell in love with
audiobooks. Nothing like sitting in a dark room with nothing to do to
make you want a story read to you. Prior to attending my procedure appointment, I loaded
up a tablet with a few audiobooks and turned the screen brightness way
down. This was my company and entertainment for the first little while. After a few days, I started venturing out of my dark room, and while I
puttered about in my sunglasses I continued with the audiobook I had started,
and I learned how much more pleasant housework is with a story, and how many more stories I could fit into my life if I could multi-task.
Keratoconus
is also the reason I love my kindle so much. I haven't given up on hard
copy yet - I love the heft of the book, the feel of the pages, and the smell of
paper and ink; but the reality is my kindle is easier for me to read
from. Print books come with certain challenges that my Kindle
addresses. Smaller fonts in print books can be addressed by increasing
the font size, the slight curve of the page near the binding is not an issue on
an e-reader screen which is perfectly flat, shadows created by the location of
the light source when reading in print are corrected by an adjustable, evenly
distributed back-light on the hardware. It takes me a little longer to read a
print book, but that's okay, I still like to sometimes. Maybe one day I
will no longer care to read print at all, but that day certainly has not come yet.
There
has always been a bit of a long standing debate/rivalry over the validity of audio
and/or e-books vs. print books. I would like to say that all formats are valid.
While I am still able to read print with a little effort, there are others who
cannot. My Grandfather-in-law has macular degeneration and is now legally blind. An avid
reader before his disease claimed his sight; he has relied heavily on audiobooks
for years.
Every
year on Keratoconus day, I try to post something to raise awareness of the
disease and its warning signs. 2018 was the first time doing so as a bookblogger. This is now my second year posting this on my blog, If you have read this far, I thank you.
If you would like to learn more, you can start by visiting https://www.keratoconusgroup.org/
If you know someone recently diagnosed, searching for "keratoconus group" on facebook and requesting admission to the group will provide a much needed peer support.
Happy
Reading!
Christine.
