‘Multiple Evanescent White Dot Syndrome, or MEWDS for Short’: My Story of Being Diagnosed with a Rare Eye Disease
By Juliet Bonci
Say it with me one time: Multiple Evanescent White Dot Syndrome, or MEWDS for short. Quite a mouthful, right? This rare eye disease developed in my left eye last year. Now, I’m sharing my story.
On May 11th, 2022, I sat in my now ex-boyfriend’s dorm room working on a project for my final exam. I saw what I thought was white fuzz stuck on an eyelash on my left eye. I tried brushing it off, but it stayed. It almost looked like a fluttering of whiteness in the upper right corner of my left eye.
I wondered: was something on my glasses? I wiped them off, put them back on, and was okay for a minute. But the fluttering appeared again. I looked in the mirror; no fuzz in sight. Throughout the day, I noticed these white flashes on and off.
Thus began the extensive journey I endured trying to figure out what the hell was going on with my eye.
Due to my insurance being out of state, when health issues arise times get challenging. I must pay out of pocket for every doctor except the urgent care or emergency room visits. So, when my health buckles, I try to wait it out and see if I’ll be okay.
The white flashes in my eye continued as I attended class and regular activities like normal. After about a week, I was scared. I didn’t know what was going on with my body. I had tried convincing myself it was some sort of migraine from the stress of finals, but I couldn’t carry on. So, I went to urgent care.
Urgent care reassured me it was probably migraines and prescribed me a pill to take. But I just didn’t feel right. In the past when I had visual migraines, they were nothing like this. A few days later, I caved in and bought the medication. After popping these pills every few hours, I saw zero improvements.
Then, I started seeing something new.
In the lower left part of that same eye, there was an odd spot that appeared. It looked like how your eyes go when someone has just snapped a photo of you with the flash on, and that little spot was there when my eye was open or closed. This was constantly there, until it began morphing.
It was exceptionally terrifying when the ever-present-after-flash began to sparkle. I was seeing an oval shape full of what looked like glittering static on a television. Listen, I love glitter, but I’d prefer to not see it in my eye like that.
This combined with the white flashes was enough to drive me mad. I sat in class, completely zoned out and consumed with worry. But how could I slow down? I was bombarded with final exams and the pressure of moving out of my apartment-style dorm.
My head felt like it was spinning constantly. I wanted to close my eyes and cry forever; let the darkness of my shut eyelids consume me. I felt like dying. But there was this little voice in my head, begging me not to give up. So, I decided to fight.
I headed into the emergency room. It was a long and torturous process, sitting in a small examining room and waiting for hours to be seen. Off-white walls glared at me while my left eye flashed uncontrollably. One panic attack and a CAT scan later, I was discharged with the conclusion that everything was fine. It was probably my vitreous gel changing.
Shortly after this visit, I moved out of my dorm and scheduled an eye exam with my dad’s doctor. He suggested this was all just migraines and diagnosed me with a separate issue in my left eye: Lattice Degeneration.
I’m so grateful he gave me this diagnosis because it prompted me to see a retina specialist in Kentucky, where my insurance is. The doctor said that I was lucky I had an appointment with her, as she specialised in rare eye diseases. Upon taking photos of my eye everything appeared normal until we saw a snapshot with an infrared camera.
My left eye was littered with small white dots. I finally had my answer: MEWDS.
The disease develops spontaneously and mostly in young, healthy adult women. It can sometimes be caused by a virus or an autoimmune disease, but for me the cause is unknown. I had about ten vials of blood taken that day and the results were all normal. The Lattice Degeneration does not present symptoms, so they just have to monitor that.
MEWDS typically resolves on its own, though sometimes the recovery process can be sped up by taking steroids, which wasn’t needed in my case.
I still see that odd, static glittery oval shape in my left eye, though it’s much fainter than when it first appeared. It has this odd blurring effect on what I’m trying to focus on, but my brain seems to tune it out most of the time. I recently visited the doctor again and they said this spot isn’t fully healed and it may never heal. That’s when I decided to give this spot a name: Richard. I’m not sure why, but I felt like that should be his name. And it does help. I think to myself when I see it, ‘That’s Richard popping in to say hello.’
This disease changed my life. It taught me how to trust my gut when it comes to my body. While I may literally see things from a different perspective now, I also view life with a newfound hope and gratitude.
To anyone struggling with their health, keep fighting. I know how defeated you can feel when you don’t have an answer but trust your intuition. Follow what feels right and battle to get the answers you deserve.
Juliet Bonci utilises words to add sparkle to life. She is a recent graduate of CUNY Queens College, majoring in theatre and minoring in writing. Juliet now holds the position of Copywriting and Research Intern at Evergreen Investments.