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Degos disease

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CNY/NNY/S. Tier: Degos disease
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It's a rare disease with only 200 cases worldwide and all but two people have died. It's called Degos disease.

"It really took a while to sink in that, well, I have limited time," said Ernie Dupont.

It was three years since 17 year old Ernie Dupont found out he's one of two people in the world known to be living with a rare and deadly disease.

Dupont said, "At first when I saw that the survival rate was zero, me and my whole family spent the rest of the night were crying."

The disease begins with lesions on the skin then progresses to tissue inside the body, destroying major organs. Dupont was headed in that direction.

"He was in the intensive care unit with sepsis, dying."

He was days from death. Doctors looked for help. They searched and emailed professionals all over the world. They got one response. A doctor from Cornell suggested the drug she gives her patient, which happens to be the only other living person with Degos.

"After an hour of giving the medication, his blood pressure from being extremely hypertensive from sepsis, when down to normal," said Dr. Aixa Toledo, rheumatologist.

The drug worked, he returned home and began college, but then more problems. He developed a lesion on his brain. Doctors gave him more of the medication and the lesion disappeared. Currently, he's having problems with his bladder and has to wear a tube to drain fluid from his lungs, even though his prognosis in unknown, he can only think of what good will come out of this experience.

"Now that I am still alive and still and having a normal life, this could help a lot of people," Dupont said.

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