CHICAGO (CBS) — It can cause blindness and make skin all over your body fall off, and doctors say it’s an illness that can be triggered by taking something as simple as ibuprofen or acetaminophen.
It’s called Stevens Johnson Syndrome.
As CBS 2’s Pamela Jones reports, doctors at Loyola University Medical Center are seeing two SJS patients each month in the Chicago area.
Experts say 30 percent of people diagnosed with SJS die, but a child from northwest Indiana has managed to beat those odds.
Ethan Maidl is 11 years old, and starts each morning with his mom cleaning and hydrating his eyes. She also inserts special contact lenses for him.
“It offers Ethan great comfort … from the inner eyelid scarring in his eye, and it gives him great vision,” said Ethan’s mom, Heidi Maidl.
Her son’s beautiful blue eyes were scarred by Stevens Johnson syndrome – an illness experts say can strike anyone at any time.
Ethan was 7 years old when his parents gave him ibuprofen and acetaminophen to break a fever. Doctors say Ethan developed an allergic reaction.
“It is said to occur about one in a million population. We see probably 20 to 25 patients a year in this part of Illinois,” said Dr. Richard Gamelli of Loyola University Medical Center’s Burn Unit.
Within a couple of days, Ethan’s skin began to fall off.
“To, honest to God, stand by and watch your son burning from the inside out, and you can’t do a thing, it has broken me down to my core,” said Heidi Maidl.
“You feel helpless,” said Ethan’s father, Kurt Maidl.
Doctors at two area hospitals failed to recognize the problem, but after Ethan was rushed to Loyola, he got the right diagnosis.
Dr. Gamelli says Ethan had to be wrapped in a special sheet, and treated much like a burn patient with second degree burns over much of his body.
“The cells are all signaled that it’s now their time to leave, and they all leave at once. So you end up with the skin being lost in large areas,” Gamelli said.
Now, Ethan spends some of his time in a vest that vibrates his chest to loosen mucus built up from lung scarring. He also has to have his eyelashes removed on a regular basis, because of eyelid scarring that causes the lashes to curl into his eyes and scratch them.
Still, his family says he leads an active life.
“It’s amazing. We go in the back yard and throw the ball around and you wouldn’t even know he has restrictions,” Kurt Maidl said.
With the special contacts, Ethan has 20-20 vision in his right eye and some vision in his left one.
“It is miraculous,” said ophthalmologist Dr. Charles Bouchard, of Loyola University Medical Center, “It’s miraculous both in the treatment of the acute eye disease, and the treatment of the chronic disease.”
Bouchard explains Ethan’s vision was saved, in the nick of time, through a surgery wrapping his eyes with donated placental tissue from Cesarean sections.
“It reduces inflammation. It reduces scarring. It reduces new blood vessel growth,” said Dr. Bouchard.
Ethan knows he’ll need medical treatment for the rest of his life, but he’ll always be grateful to the doctors who gave him a future.
When asked how much the doctors mean to him Ethan replied, “A lot. Saved my life.”
Doctors say over the counter pain killers aren’t the only triggers for Stevens Johnson Syndrome. It can also strike people who are taking antibiotics or anti-seizure drugs. E
than’s mom’s mission is to raise awareness about it, so more doctors will be able to diagnose it quicker. She says any further delay in her son’s case could have cost him his vision entirely – or his life.
Doctors at Loyola are working on starting a study of SJS patients to see whether they share any factors in their genetic makeup that could lead to the illness.