Rare Syndrome Took Life of NBA Legend

June 22, 2010— -- Basketball legend Manute Bol's dream of building schools in Sudan to unify the warring ethnic factions that killed his relatives may have ultimately cost him his life.

One of the MBA's tallest players ever, Bol was on a charity mission to his native Sudan when an unusual series of medical conditions spiraled into a reaction called Stevens-Johnson Syndrome. Blisters from the syndrome were so severe that he was unable to eat or drink for 11 days.

Bol died on June 19, a month after his poor health forced his return home from Africa. He was 47.

"He ultimately gave his life for his country," said Rev. Prichard, executive director of Sudan Sunrise, which worked with Bol to build schools in southern Sudan.

From his deathbed, Bol, continued planning advocacy tours to Sudan. "Four days before he died, he said, 'I want to go back to Sudan in October,'" Prichard recalled.

Bol played 10 seasons in the National Basketball Association. At 7 feet, 7 inches tall, he led the league in blocks in 1985-86 and 1988-89 with Golden State.

On his last trip to Africa, Prichard said, Bol was visiting southern Sudan at the request of the president to help deliver an anti-corruption message.

But Bol had arrived in Sudan already ill with a kidney infection.

"Manute was determined to get back to southern Sudan, and he was taking an antibiotic," Prichard said. "When he boarded the U.N. plane he left one bag behind due to space and he was separated (from) his medication."

Bol's infection worsened and he was sent to a hospital in Nairobi where he received medication for his kidney infection which ultimately led to a Stevens-Johnson Syndrome, Prichard said.

Stevens-Johnson syndrome is an immune system reaction that results in blisters on the skin and on the eyes, lips, mouth, and any other mucus membrane in the body.

Prichard said Bol's blisters were so bad it "caused his mouth to be so sore, his tongue swollen" and he was unable to eat or drink.

"I think getting dehydrated was what contributed to his kidney failure," he said.

Severe blisters from Stevens-Johnson Syndrome often send patients to the intensive care unit and specialty burn centers, said Dr. Joseph Jorizzo, a member of the American Academy of Dermatology.

Manute Bol Suffered Stevens-Johnson Syndrome

"It could feel to a patient a little like a burn, even though it's not a burn at all," said Jorrizo, who is the founding chair of dermatology at Wake Forest University in Winston-Salem, N.C.

Jorrizo said so much skin could be lost in Stevens-Johnson Syndrome that patients needs experts in treating severe burns to stave off toxic and life-threatening infections.

The blisters of Steven-Johnson Syndrome are unlike cold sores or regular burns, said Dr. Elaine Josephson, a fellow and national spokeswoman for American College of Emergency Physicians. As an emergency room physician, she can spot them right away.

"It's mildly itchy, pink red blotches symmetrically arranged. It's red and it has a pale center on the outside," said Josephson.

However Josephson said the syndrome is rare enough that many people arrive at the emergency room only after other treatments have failed.

"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.

Manute Bol Was Struggling for Weeks

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.