Far from home and close to death, local man is diagnosed with Stevens Johnson Syndrome, a sudden and violent reaction to everyday medications A SUDDEN ILLNESS ROAD TO RECOVERY
'He looked like a burn victim. All I could see were his eyes.' BY MARY BETH SCHWEIGERT, Staff Writer
Jonah Lake was excited to visit Puerto Rico for the first time.
He and his co-workers would spend two weeks repairing equipment inside power plants, and take in some local sights during their off hours.
But just days after his plane touched down 1,600 miles from his Paradise home, Lake was dangerously close to death.
First he broke out in a mysterious rash. Then he spiked a 104-degree fever. His lips and throat swelled, and his eyes got red.
Within hours, the rash covered Lake's body. It didn't itch; it hurt. And the pain was unbearable.
Doctors initially chalked up Lake's symptoms to an allergic reaction. But several days and three hospitals later, Lake, then 23, was diagnosed with Stevens Johnson Syndrome, a life-threatening reaction to such everyday drugs as penicillin and ibuprofen.
A year after his diagnosis, Lake battles lingering complications, including scarred eyelids, zapped energy and excruciating joint pain.
He knows his SJS might return -- an online friend recently died from a flare-up -- but he refuses to live life looking over his shoulder. He's determined to raise awareness and money to fight his little-known illness.
"If it happens (again), there's nothing I can do about it," Lake says.
"Same as the first time."
The first time Lake went to the emergency room, doctors gave him eye drops and Benadryl, and sent him back to his hotel.
But by the next morning, his rash and pain had gotten so bad, a hotel manager drove him back to the hospital.
Doctors weren't sure what was wrong. They suggested a transfer, but Lake didn't have cash to pay the ambulance driver.
Over the next 24 hours, his condition deteriorated. Finally the driver agreed to stop at an ATM so Lake could withdraw $60 to pay for the ride.
A doctor at that hospital said Lake probably had SJS but would need to seek treatment at a third hospital.
Meanwhile, Lake's cellphone battery died, and no one could reach him. His parents, Jay and Kathy, and three older brothers were frantic.
"I lost him for a whole evening," Kathy Lake says. "I was going crazy."
Lake's boss eventually found him by driving around and checking hospitals.
Lake's brother, Josh, flew in from his home in Miami. He called his mother and told her to come to Puerto Rico right away -- and to Google SJS.
"That was a big mistake," Mrs. Lake says. "I really lost it."
But she didn't fully comprehend the severity of Lake's illness until she arrived at the hospital.
"I had to sit down," she says. "He looked like a burn victim. All I could see was his eyes. His skin was peeling."
Lake spent two weeks in intensive care. The hospital normally does not allow visitors in ICU. But, Lake says, "They made an exception if they thought you were going to die."
Since SJS has no cure, Lake's doctors focused on comfort measures and infection prevention. Visitors had to wear gowns and masks.
The rash covered three-quarters of Lake's skin, which began to peel off. The pain and burning in his skin, eyes and especially his lips was so intense that morphine didn't touch it.
Lake, who is 5 feet 5 inches tall, lost 30 pounds. "Even if water hit my mouth, it would feel like I was chewing on hot coals," he says.
Doctors eventually numbed Lake's throat and mouth long enough for him to sip a nutritional drink.
Once Lake's condition stabilized, his family arranged for an air ambulance to fly him to Philadelphia's Hahnemann Hospital, where he spent two more weeks recovering.
Mrs. Lake's health-insurance policy covered her son's care. The bill for his Philadelphia hospital room alone was $90,000.
Lake still sees a battery of doctors, including eye and burn specialists, a dermatologist and rheumatologist.
He believes he got SJS from a drug prescribed to him for a medical condition. He no longer takes the medication.
Lake's skin is scarred but mostly healed. He remains very vulnerable to sunburn, and cuts take longer to heal. The inside of his mouth is scarred, and salty food makes his lips burn and swell.
Prosthetic lenses protect his eyes and relieve dryness. Pain from scarring in his joints keeps him awake at night.
Lake has regained the weight he lost but not his strength or energy. He catches colds and other minor illnesses more easily, and they linger longer.
He has returned to work and his rock-climbing hobby -- even going ice climbing in New Hampshire right after Christmas -- but not always with his old vigor.
"I'm not as fresh as I used to be," he says. "I feel like an old man."
Lake, who leads a virtual support group, has met at least 200 fellow SJS survivors. People think SJS is rarer than it actually is, he says, because drug companies are not required to report adverse reactions to the FDA.
Last August, Lake held a 24-hour free-throw challenge to raise money for the SJS Foundation. He hopes to make it an annual event.
Lake and his family try not to think about the possibility that his SJS could return someday. He no longer takes any kind of medication, even Tylenol.
"If I'm in pain," he says, "so be it."