"Stevens-Johnson Syndrome is a life threatening condition, affects the skin, causes the epidermis of the skin to separate from the dermis," said Josephson. "We really don't know what's causing it, but the main class of known causes is medications and infections."
Doctors have no cure for Stevens-Johnson Syndrome. Once it starts, stopping the offending medication may help but it's not a guarantee.
"Everybody's different. Sometimes it goes a little bit, and it doesn't threaten their life and sometimes their skin sloughs off," said Dr. James Adams, a member of the American College of Emergency Physicians.
Adams says anyone who has blisters that resemble the symptoms of Stevens-Johnson Syndrome should immediately see a doctor.
"The first thing people will see is that they will get a rash, especially if the rash involves the mouth or the conjunctive area of the eye, so inside the eyelid, that's dangerous," said Adams, professor and chair of the department of emergency medicine at Northwestern University in Chicago.
"Rashes that involve the mucous membranes or involve blistering are danger signs -- people need to go to the doctor or the emergency room," he said.
Prichard doesn't know what ultimately caused Bol's death, but noted he hadn't been healthy enough to fly home to Kansas since he returned to the United States on May 12.
"The skin, it itched and hurt and it was very painful, but he didn't have the experience of losing his skin," said Prichard. "It was just, his body was giving out."
Prichard said Bol left behind a newborn daughter who was born during his trip to Africa. Because of his infections, Bol was only able to gaze at the infant from his hospital bed as his wife held her at the door, Prichard said.
Bol also left his dream of building 41 schools unfinished. So far, Sudan Sunrise is awaiting a roof on the second building in the first school.
"It was a school that existed before Manute got involved -- they didn't have classrooms, they just used to have school in the shade (of) the tree," said Prichard. That meant for five months during the rainy season school could not be in session.
Despite decades-long religious and tribal fighting which killed many of Bol's relatives, Prichard said he wanted a school where Muslims, Christians and various tribes studied together.
"He was in terrible pain, but he went anywhere he thought could help him build his school," said Prichard.
The Associated Press contributed to this report.