Thursday, 13 Augst 2020 | 16:20 WIB

Rare Disease: A Simple Hug Could Kill Teenager with Epidermolysis Bullosa

Rare Disease: A Simple Hug Could Kill Teenager with Epidermolysis Bullosa (dailymail)

NEW YORK, NETRALNEWS.COM - John Hudson Dilgen is born with Epidermolysis bullosa, a condition that causes the surface skin to become fragile and causing open cuts and blisters and pain. This rare disease only affects one in every 50,000 children in the United States (US).

Every day, John endures pain as every inch of his skin blisters. Most of his surface skin have been wrapped in bandages to reduce the risk of more wounds from simple things like hugs or pats on the back that can threaten his life. About 95 percent of John's body is covered with open wounds

John, who lives on Staten Island, New York, tries his best to help other children with the condition by raising awareness online and organizing charity events.

"EB has certainly affected my whole life. Every kind of trauma or friction on my skin causes a big wound," John said, as quoted by the Daily Mail.

John consumes a variety of medication twice a day, which includes probiotics and sodium. He needs 24-hour care from his mother and father, Faye and John Dilgen, and his nurse, Nicole Collins.

For information, Epidermolysis Bullosa (EB) is a general term used to describe a group of rare inherited disorders that cause the skin to become very fragile. Every trauma or friction causes the patient's skin to blister.

EB affects about one in every 50,000 people worldwide. About 40 percent of patients do not survive in the first year and most do not live above five years.