Hi there, thanks for coming. It’s good to see you here. I’ve decided it’s time I start talking more frequently about my problems on the internet, specifically the one big issue that has taken control over my life for better and for worse. Maybe this is to exercise my writing skills, maybe I’m sick and tired of complaining to my mom and my friends, or maybe I’m trying to learn more about how to live my life better. In any case, hopefully this will help someone else out there, because I for sure had / have no one to turn to who knows what it’s like being 26, living with Stargardt’s Disease (Macular Dystrophy) with decently low vision, in Los Angeles, without a driver’s license, trying my best to live an independent life.
Before I continue, here’s what you gotta know:
At age 11, II started having issues seeing the board in class. We went to a doctor, who couldn’t see anything wrong with me.
By age 14 I couldn’t see the board even as I sat in the front row
By age 17 I had seen 9 doctors, had an MRI, seen an eastern medicine guru in Iran, all to no avail. I had convinced myself that there was nothing actually wrong with my vision but that it was all just in my head.
My last semester of high school my mother convinced me to go see her eye doctor friend, and I reluctantly agreed to go to my 10th doctor’s visit, thinking it would lead nowhere. Well, for the first time in 7 years, the doctor noticed white spots in my retina so she referred me over to the retina specialist where I was diagnosed with Macular Dystrophy (or Stargardt’s Disease)
What is Macular Dystrophy?
According to the US National Library of Medicine: “Vitelliform macular dystrophy is a genetic eye disorder that can cause progressive vision loss. This disorder affects the retina, the specialized light-sensitive tissue that lines the back of the eye. Specifically, vitelliform macular dystrophy disrupts cells in a small area near the center of the retina called the macula. The macula is responsible for sharp central vision, which is needed for detailed tasks such as reading, driving, and recognizing faces.”
Simply put: I have 20/200 vision, am legally blind, am very near sighted, cannot see much detail, cannot focus on one point, do not have a driver’s license,too much light bothers me, and most importantly glasses/contacts do not help.
In later posts, I’ll be going into things like how it’s affected my life, possible trials that are being done to find a cure, and how I’ve found my new normal to live my life as best as I can since being diagnosed, since graduating college, since entering the world as a legally disabled person and navigating spaces and places in search for accessibility, independence and happiness.
ps: there might be typos along the way.. I’m legally blind, it’s bound to happen lol
thank you for reading.