The most remarkable thing Lauren Johnson did Wednesday morning was — nothing.
During two previous visits to TODAY’s New York studios, the shy 12-year-old sat on a couch and sneezed and sneezed and sneezed. The achoos came at the rate of up to 12 a minute and 12,000 a day, pausing only when she fell into the deepest phases of sleep.
But Wednesday Lauren sat quietly, her hands clasped between her knees as she listened to her mother and two doctors talk with TODAY’s Natalie Morales about the strange disease she had that made her sneeze continuously for four months, and how it was brought under control.
“How are you feeling?” Morales asked.
“A lot better,” Lauren said politely.
Her mother, Lynn Johnson, took over from there.
“Two weeks ago, it stopped gradually over a two-day period,” she said.
No more ‘achoo’
For that, Lauren has Dr. Denis Bouboulis to thank. An allergist and immunologist, Bouboulis realized that Lauren had a rare and only recently identified condition called PANDAS. That’s not a reference to the cute Chinese bears; instead it’s a complicated acronym for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections.
What it means in layman’s terms is that in the process of fighting a strep throat infection, Lauren’s immune system went haywire, producing antibodies that ended up migrating to her brain and attacking her own tissue. The disorder can cause tics and obsessive-compulsive behavior — or, in Lauren’s case, nonstop sneezing.
But no one could put a finger on what was causing her sneezing. At the time, NBC’s chief medical editor, Dr. Nancy Snyderman, speculated that there could be a psychosomatic aspect to it.
‘Body turns on itself’
There is no clinical test for PANDAS; Bouboulis arrived at his diagnosis by running through a checklist of symptoms. The treatment for the syndrome is called IVIG, which stands for intravenous immunoglobulin. The treatment bolsters the victim’s immune system, allowing it to fight off the invaders.
“The underlying theme is a bacterial infection that triggers almost a hyperreaction in the body,” Snyderman explained. “And then the body sort of turns on itself when your immune system sees itself as foreign.”
“There is molecular mimicry,” Bouboulis agreed, expanding on Snyderman’s comments. “There are proteins on the strep that generate an immune response. These antibodies mistakenly think that certain brain tissue is actually strep.”
But Lauren and her mother’s relief is tempered by the knowledge that there is no cure for PANDAS. The sneezing could return with a future strep infection.
“She’s not cured,” Lynn told Morales. “That’s the biggest problem with this disease. Parents live in fear because they can be reexposed to bacteria, including strep, and re-manifest again. Some children go years and some children go months. Some children never re-manifest again.”
Lynn said the reason she came on TODAY is to help educate others about this little-understood syndrome and to encourage medical investigation into it.
“We need to learn more about it,” she said. “We need more research.”
For more information about PANDAS, click here to visit the PANDAS Resource Network.