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Folks with Ocular Melanoma Cluster on Social Media

Posted by Ilena Di Toro | Posted on July 3, 2018

Ocular melanoma, while rare, is the most common adult eye cancer. This type of cancer occurs at the rate of 1 in every 2,500 people. Typically, it is found in Caucasians between the ages of 30 and 50. It is different from skin melanoma because it is not caused by exposure to the sun. This disease presents a few symptoms, such as flashes of light, or none at all. It can cause vision loss or blindness, and it can spread to the brain and liver. It is very serious.

At present, there is no medical cure for this disease. Treatments include radiation and enucleation (removal of the eye). In two percent of cases, ocular melanoma is inherited from parents. This is known as BAP-1 cancer predisposition syndrome.

Recently, one group of people in North Carolina and one in Alabama were diagnosed with this disease. While experts haven’t called this a cluster, there are similarities among group members. People in the Alabama group were alums of Auburn University and education majors. In addition, two people in this group belonged to the same sorority.

The Centers for Disease Control (CDC) studied the group in North Carolina and concluded that it was not a disease cluster. The Alabama group was also studied and it was not found to be a true disease cluster. Yet, the persons in this group all went to the same university, had the same major, and are the same age. Dr. Marlana Orloff, the oncologist at the Sidney Kimmel Cancer Center at Thomas Jefferson University in Philadelphia is studying the group and treating one member.

Despite the discovery of these two groups, overall incidents of the disease aren’t increasing. Thanks to the Internet, specifically social media, information spreads much faster than in years past. Both doctors and patients have to be vigilant about the information that is out there. While there is an abundance of information, not all of it is accurate. “Trust but verify” is what Carol Shields, MD, chief of ocular oncology at Wills Eye Hospital says. She is familiar with these cases of ocular melanoma after studying the North Carolina cluster.

What is the lesson for your patients? Ocular melanoma is rare, but there are steps that everyone should take to maintain good eye health. The most obvious is to get an eye exam every year from a board-certified optometrist or ophthalmologist. Many eye diseases do not present with symptoms, therefore if a disease is found, it will be easier to treat if it is caught in its earliest stage.

As for the Alabama group of patients, they are seeking others who have ocular melanoma. One person in the group, Ashley McCrary, started the Auburn Ocular Melanoma page on Facebook as a way to support and educate those with the disease. For more information, go to

“Until we get more research [on this disease], we’re not [going to] get anywhere,” said Lori Lee, a member of the Alabama group. “We’ve got to have it so that we can start linking all of them together to try to find a cause, and then one day, hopefully, a cure.”


One Response to “Folks with Ocular Melanoma Cluster on Social Media”

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