SJS: East Texan diagnosed with rare skin disease - KLTV.com - Tyler, Longview, Jacksonville |ETX News

SJS: East Texan diagnosed with rare skin disease

By Sara Story - bio | email

It's a life threatening skin disease, so rare that doctors may never see it in their career. It's called Stevens Johnson Syndrome, and an East Texas seven-year-old has it. She's home from the hospital just in time from the holidays.       

Bergen's smile is surrounded by faint reminders of a life threatening skin disease. It put her in the hospital less than two weeks ago.  

"Within three days, her lips were swelling. She had soars inside of her mouth, basically her body was burning from the inside out," said Bergen's mom, Michelle, as she described the reaction her daughter had after taking antibiotics to treat pneumonia.  

"I was really shocked because it was so fast acting. [We] just went from doctor to doctor, and they just didn't know," said Michelle.

Finally, a doctor diagnosed her with Stevens Johnson Syndrome.  It's a disease that attacks mucus membranes in her body. 

"If you think of that, it's the eyes, the nose, the ears, the esophagus," Michelle said.

"It is usually diagnosed as chicken pox or measles, or in the elderly they say it's shingles," said Jean McCawley, the founder of the Stevens Johnson Foundation.

Jean battled the same nightmare when her daughter Julie was diagnosed with SJS as an infant.  

"She was diagnosed with pediatric epilepsy, and they started her on drugs to control seizures. Two weeks to the day, her eyes swelled shut," said Jean. 

Julie survived the blisters, but SJS took her sight in one eye and partially in the other.

"It is life threatening. There's not much they can do. In severe cases they will treat them like a burn victim. Pretty much all we could do was keep her comfortable. Pain medication through her IV," Michelle said.

Michelle and Jean both said it was a high fever and rash that followed the medication, and they stress the importance of seeing a doctor if this happens.

Bergen's family needs help to pay their medical bills and making sure their kids get a Christmas.  A fund has been set up for Bergen Kingery at Southside Bank.

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