Costa Rica News – Diana Ojeda, known for her smile and her “butterfly skin,” passed away at home on Thursday. At 30 years old, she has set a record for length of life with a difficult and painful disease of the skin, dystrophic epidermolysis bullosa.
This affliction affects two out of every 100,000 on the planet. It causes painful sores throughout the body. Diana was not able to be exposed to extreme temperature or the sun. She was not able to feel the ocean or a shower or a strong hug because of the pain it would cause.
At the time of her birth, doctors thought she would live just a few hours but that turned into days and months and years. The life expectancy with this condition does not usually exceed 20 years. Her case has been recorded by the gallery of the Center for Orphan Diseases of the University of Pennsylvania, USA.
Her family recounts that her smile is forever engraved in their memories. Through all the pain she always maintained an incredible optimism and hope. They say that knowing and loving her was a joy.