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The Organization That’s Envisioning a Cure for Patients With This Rare Disease

Photo: Courtesy of v2osk on Unsplash

Dr. Lauren Walters

Volunteer, A Cure In Sight

“Ocular melanoma,” two words that changed my life. 

My journey with the rare disease began with months of seeing flashing lights and little black floaters. These symptoms were worse when I was in the sun and then went back into the dark. Each day I drove into the parking garage at my new place of employment, I had to stop and really get used to the dark until I could see. 

I was feeling quite scared and decided to go to the eye doctor. He said my pupil was dilated and I needed to go home and come back in two days. I did so and all seemed to be fine. He fit me with new lenses and sent me on my way. 

Four months later, I was talking to another doctor who said a dilated pupil could be a sign of a brain tumor. She said to check my eyes first. 

I went to my ophthalmologist, who dilated my eyes and found the tumor. She sent me to a retina specialist who got me to Jules Stein immediately. 

Start of a journey

I began my journey with this rare disease and a wonderful doctor named Dr. T. McCannel. She walked into the room and said I had ocular melanoma. My mother asked what that was. Dr. McCannel explained that it was eye cancer. 

Because the disease was so rare, I had no idea what to do next. Dr. McCannel said there were several tests that needed to be done, including a week-long plaque radiation and careful examination of the eye to see how it progresses. It was also necessary to meet with an oncologist, so I did. I had the plaque put on the tumor and went home. 

Seven days later, I went back to the hospital to have the plaque removed. I returned to the doctor several times for eye checks. 

A Cure in Sight

While managing treatment for my rare disease, I felt so alone. Luckily, I found comfort online with a non-profit called A Cure in Sight (ACIS). The foundation offered a cause I could support and connected me with many other people dealing with the same things I was.

ACIS was founded in 2014 with the mission of educating the public about ocular melanoma, helping patients financially, and supporting ongoing research for both a cure and to help reduce side effects of current treatments.

ACIS is driven by the belief that a cancer diagnosis affects the whole family and not just the patient. With that in mind, it has developed programs, awareness products, and educational materials that are distributed worldwide.  

To date ACIS has reached over 20,000 people with educational material and support, and has awarded over $168,000 in grants for families facing financial hardship due to their diagnosis, and to ongoing ocular melanoma research programs.

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