A big thank you to Alexa for being the first to take part in the 'A Look Into' series! Lex has shared her story below...
A Look Into: Lattice Degeneration with Alexa
What is your diagnosis?
I was diagnosed with Lattice Degeneration in both eyes.
How long have you been diagnosed for?
My initial diagnosis was in December of 2009.
What were your signs and symptoms/how did you come to be diagnosed?
Honestly, I was convinced that I was studying too hard. I was halfway through my master's degree when I started seeing green. Not a pretty shade of forest green – it was a neon, alien glowing green. It would track around my vision as I moved my eyes. I was also exhausted all of the time, and I would find simple tasks like reading a book frustrating.
I didn't put it all together; my mother actually did. She encouraged me to see an eye doctor, and after I turned in my last final of the semester, I went. If I'd waited much longer, I would have lost significantly more eyesight.
Had you, or anyone around you, heard of your condition before you were diagnosed?
No, none of us had heard of it before! Even after more than a decade, I don't know many people who have lattice.
How does the condition affect you?
My condition has (thankfully) been stable for quite a while. However, the aftermath of the surgeries is what impacts me the most. My right eye has no close-up vision, I am missing a significant portion of peripheral vision in both eyes, I see double permanently, and I have regular flashes and floaters. I also have bubbles and debris floating around in the right side, and my right eye rolls to the side at will. Cosmetically, my right pupil is permanently dilated.
Have you had/been able to have or try any treatments at all?
In 2009/2010, I had four surgeries—three in my right eye and one in my left. The team was incredible, and they learned a great deal from how my right eye reacted to treatments, leading them to save so much sight in my left. To help with the stress and insomnia during that time (I would stay awake trying to catch any signs that my retinas were detaching), I also started acupuncture and found it quite helpful.
What would you like others to know about your condition?
Many visual disabilities change daily. Some days I can see street signs; some days, the double vision makes it too difficult. Some days I don't have massive headaches; some days, I do. If someone tells you different symptoms on different days or if they suddenly look perfectly healthy, they aren't faking it. Enjoy the good days with them but be considerate about how rare those might be for them. I've had so many people say, "You must have enough sight if you can see _____!" I'd like to ask them exactly what enough sight means, but more than anything, I'd like them to know how hard I have to work to see anything at all.
Do you have any advice for newly diagnosed people?
It's absolutely fine to feel however you feel. I was met with so many people saying that it could be worse, which made me feel like I was handling things the wrong way. I wasn't! The mental aspects of vision loss are in many ways tougher than the physical. Being kind to yourself does not mean being fake happy or forcing positivity. It means going at your own pace, getting help through therapy or support groups, and understanding that you can grieve your old reality. You can also always reach out to other vision-loss experiencers if you need us.
Comments