CU doctor uses amniotic film to save sight of actress afflicted with Stevens-Johnson Syndrome
Syndrome causes bodywide blisters, rash
Last Updated: 254 days ago
AURORA, Colo. - A budding New York actress who came to Colorado to do a documentary on her brother's Electro Convulsive Therapy treatment for mental illness ended up in a hospital fighting for her life, after taking medication prescribed by her doctor to treat depression.
Josephine Ganner told 7NEWS that her doctor in New York prescribed Lamictal, and that 10 days after her dose was bumped up, she had a reaction that was nearly fatal.
"I was having a hard time breathing," Ganner said, "and was having internal pain. Then, I started developing spots."
Ganner said she went to an urgent care clinic in Boulder and was misdiagnosed.
"They told me I had allergies, and then they told me I had Herpes, gave me some pamphlets and told me to go home," she said.
At home, her condition worsened. Her spots started turning into blisters.
Ganner said she then took a cab to a hospital in Boulder where the infectious disease specialist correctly diagnosed Stevens-Johnson Syndrome.
According to the Stevens-Johnson Syndrome Foundation, SJS is a debilitating adverse drug reaction that causes patients to literally burn from the inside out.
Blisters can affect the mouth, eyes, ears, nose and private areas.
After her diagnosis, Ganner was transferred to University of Colorado Hospital, where patients with SJS are treated in the Burn Center.
The actress, who is also a writer and comedian, said she was in such pain that doctors gave her heavy-duty pain medication while they inserted a breathing tube and treated her blisters, which had spread over her entire body, inside and out.
“I don’t remember 17 days of my life,” Ganner said. “I was in a drug-induced coma.”
She said the pain medication caused hallucinations.
Ganner underwent surgery on her eyes, which were also affected by blisters.
“It was terrifying,” said Karen Kronauer, Ganner’s mom. “We have pictures of how bad it was.”
Kronauer pulled up one picture on her cell phone showing her daughter’s face covered with blisters, and another showing her daughter immediately after surgery, her face red and purple.
Ganner said she’s grateful the surgery happened at CU, where Dr. Darren Gregory specializes in saving the eyesight of SJS patients, using amniotic membrane taken from a placenta.
Gregory told 7NEWS that SJS blisters on skin “usually heal without much consequence, but on the eyes it heals with scar tissue.”
He said that scar tissue can lead to severe, chronic pain and visual problems.
Gregory is a pioneer in the use of amniotic membrane to treat blistering eyes.
“It has a very potent anti-inflammatory effect,” he said. “It allows damaged tissues to regenerate and heal without scar tissue.”
Ganner still has pink blotches on her skin and red, dry eyes.
She said she’s a little worried about whether she’ll be able to work again as an actress.
“I’m scared,” she said. “I don’t know how this is going to heal.”
Hospital officials brought in a former SJS patient to help reassure Ganner.
Emilie Nickoloff said she contracted the syndrome 5 years ago.
“I don’t know how I got it,” Nickoloff told 7NEWS. “I just got a rash and now I’m leery of all medications.”
Nickoloff, who is now a young mother, said she was blind for two months while doctors treated her eyes, so she never saw her rash turn into blisters.
“I lost my fingernails and toenails,” she said. “I had to stay out of the sun. My eyes were very sensitive to light.”
Nickoloff is part of the SOAR program, (Survivors Offering Assistance in Recovery) which provides formal training for survivors and family volunteers so they may offer one-on-one support to burn survivor and loved ones affected by those types of injuries.
Nickoloff said her nails have grown back, and her skin is back to normal.
“It’s as good as new,” she said.
Ganner said she hopes she too can fully recover.
She’s still experiencing symptoms.
“I get very cold and then I get very hot,” she said. “I have to keep the spots constantly moisturized.
Her dad says he’s seeing slow, steady progress.
“She’s much more human now, and we’re happy to have her,” said Ren Ganner.
Kronauer said she’s thankful for all the expertise at the University of Colorado Hospital and for the support of prayer groups all around the country.
“I think there’s incredible energy from all this love that has contributed to her moving forward,” Kronauer said.
Mom’s optimism is tempered by how it all happened.
“It’s been difficult,” Kronauer said, “to see such a beautiful girl go through what she went through overnight. And the anger of it being triggered by a prescription wasn’t recklessness on her part. It was prescribed.”
Ganner sees meaning with her experience.
She said her brother, who she came to do a documentary on, was on the same medication.
“I feel as if my brother was supposed to get it (SJS), but I took one for the team.
Ganner said her documentary crew is now focusing on her story.
“This has given me a greater purpose,” she told 7NEWS, “because people don’t know about this disease.”
Once she’s done, she’ll again focus on her brother.
“There are hundreds of kids alone in their rooms, afraid to leave their homes, who can be helped,” she said. “I want to shed some light on mental illness.”
Ganner said, “There isn’t funding for it, there is a stigma around it and I think there needs to be more understanding. That’s my hope.”
To learn more about the actress and the production company's focus, check out their facebook page:
For more information about Stevens-Johnson Syndrome visit the Stevens-Johnson Syndrome Foundation website: http://sjsupport.org/
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