Epidermolysis bullosa dystrophica is one of the major forms of epidermolysis bullosa, an illness that causes fragile, blistering skin, that may appear in response to minor injury; these blisters also occur inside the body, the illness has no cure and patients with the condition usually don’t leave past 15-16 years of age. It’s an inherited condition.

Costa Rican Diana Ojeda surpassed the life expectancy reaching the age of 30, she was born June 25, 1988 and passed away the morning of August 2, 2018.

Those who suffer of this condition are often called “butterfly children” since their skin is as sensitive and delicate as the wings of a butterfly. The condition is aggressive and very painful.

“I live in pain every day”, said Ojeda to national online magazine LizethCastro.tv , in the same interview Ojeda detailed the torture that normal regular habits such as bathing represented for patients of this disease. She explained that taking a bath required at least 5 hours, all new blisters needed to be lanced and drained, which meant excruciating pain. The blistering skin is vulnerable to bacterial infection.

The rear disease is suffered by 2 out of 100,000 people in the planet.

“If this pain so big is for someone who suffers to feel better, then I ask God to grant me the strength, so I can suffer more”, stated Diana in an article for national daily La Nacion.

Ojeda was invited in 2016 to visit The Orphan Disease Center of the University of Pennsylvania to speak about her condition and as part of the activity ODC’s Open House Reception and Million Dollar Bike Ride charity event that gathered funds for the investigation of this disease.

Rest in Peace Diana Ojeda.