Gamers and Cure worked together to represent the rare disease community

LEMOYNE, Pa. (WHTM) – A superhero is not always the one wearing a cape taking out bad guys. To 12-year-old HHT patient Anthony Brown, who is currently living with arteriovenous malformations in his brain and lungs, the hero to him are the gamers who desire to make a difference in this world.

That’s what Eric Northern, the founder of the Red Hat Games group from Lancaster, is planning to do for Anthony and the other 1.4 million people in the world with HHT.

This weekend, Eric and 25 other gamers competed in a 30-hour video game marathon broadcasted live through for the global HHT community to witness.

They desire to raise awareness of this disease. “Each game is a victory. This event gives a face to a group that lives with such a difficult and misunderstood condition. It’s gratifying that we can educate those who might not have ever known of the risk otherwise.”

HHT, hereditary hemorrhagic telangiectasia, is known for causing debilitating nosebleeds, it is medically diagnosed as a genetic disease that causes malformed blood vessels, leading to a sudden and extreme bleeding throughout the body. It can result in a stroke, brain hemorrhage, heart failure, and death if not treated properly. There is currently no cure.

Because HHT is misinterpreted, masking other ailments, it can take up to 30 years to receive a diagnosis, which is why the gamers chose to play thirty games in three days.

“This is out first global awareness event with the potential to reach the 90% of people with HHT who haven’t been diagnosed. Can you imagine a family turning into the broadcast, hearing about HHT and realizing they might have the condition? Education is the direct link to getting the right treatment.” said Cure HHT Executive Director Marianne Clancy.

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