Group of FSU students filming documentary on often-misdiagnosed disease
Posted: 03/05/2013 07:00:26 AM EST
Read more:http://www.sentinelandenterprise.com/topstory/ci_22719804/group-fsu-students-filming-documentary-often-misdiagnosed-disease#ixzz2Mkior0yW
anything but.
PANDAS, which stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections, also referred to as PANS, or Pediatric Acute-onset Neuropsychiatric Syndrome, can cause an overnight personality change in a child after a week of strep throat, pneumonia, Lyme disease and other flulike bacterial illnesses.
After several bouts of strep throat in her childhood, Tozier, a junior at Fitchburg State University, developed motor and vocal tics, most often associated with Tourette's syndrome, which affected her ability to concentrate in school.
"I won an award in fifth grade because of my high math scores, and after my PANDAS set in, I couldn't even do basic algebra," Tozier said.
SENTINEL & ENTERPRISE photos / JOHN LOVE Fitchburg State University film students talk about their involvement on a documentary about the condition known as PANDAS, which can cause an overnight personality change in a child after a week of strep throat, pneumonia, Lyme disease and other flulike bacterial illnesses. From left are cinematographers Guthrie Roy Hartford and Jake Sambito, producer Joe Tringale, director Shelby Tozier, who suffered from PANDAS, and editor Sammi Gorman.
Tozier, 21, from Waterville, Maine, is working with a group of fellow FSU film students to create a documentary titled "P.A.N.D.AS.: A Real Life Case of Dr. Jekyll and Mr. Hyde," to spread awareness of both the disease and the fact that it's completely treatable.
The problem, however, is that most doctors will simply try to treat the symptoms and not find the actual cause, Tozier said.
Children suffering from PANDAS will often become anxious, depressed, obsessive-compulsive and even suicidal, she said, leading to diagnosis of a multitude of mental
SENTINEL & ENTERPRISE / JOHN LOVE Fitchburg State University junior Shelby Tozier, who has PANDAS, will be the director on the film.
Though the mechanism hasn't been proven, researchers at the National Institute of Mental Health believe that PANDAS works similarly to rheumatic fever, an autoimmune disorder also triggered by strep-throat infections. When a bacterial infection is present, the body will produce antibodies to eliminate the bacteria, but with rheumatic fever, the antibodies mistakenly attack the heart valves, joints and certain parts of the brain.
In PANDAS, the National Institute of Mental Health believes the antibodies attack parts of the brain, such as the basal ganglia, which is responsible for movement and behavior.
Tozier hopes the documentary film she and her peers are directing will give a voice to the children and families suffering from PANDAS who are often not taken seriously in the medical community and have to search for knowledgeable doctors who can treat them.
She and her team have plans to travel to Boston, New York City, Los Angeles, Austin, Texas, and Columbus, Ohio, to interview families affected by the disease. They also plan to interview National Institute of Mental Health investigator Dr. Susan Swedo, who discovered PANDAS in 1998, and New Jersey-based child neurologist and PANDAS expert Dr. Rosario Trifiletti.
According to Joseph Tringale, 21, of Wakefield, who is producing the project, the group has applied for $5,800 in funding through the school to cover their travel expenses, and they've already raised $800 in a campaign through the international crowdfunding website Indiegogo to cover food, lodging, and T-shirts and teddy bears they will give to the children in the hospitals they'll be visiting.
Tringale said they would also soon be starting a campaign on a similar website called Kickstarter.
If the group is able to secure the university funding within the next week, they'll be able to start traveling for the project during spring break, he said. Otherwise, they'll be flying out on weekends so that the project doesn't interfere with their other classes.
The project is already gaining attention across the country.
"The outpouring of support from the national community is incredible," Tringale said, noting that the group's Facebook page already had more than 96,000 hits as of two weeks ago.
Cinematographer Guthrie Roy Hartford, 24, of Gardner, said he was "hooked immediately" when the idea was pitched to him. He and fellow cinematographer Jake Sambito, 24, of Fitchburg, said they'd never heard of the illness before.
"I thought it would be a great opportunity to use my skills in cinematography to do something substantial, to get the word out on something that is affecting children and teens across the world in such a devastating way," Sambito said.
Sammi Gorman, 21, of Malta, N.Y., will be the editor for the project.
While all they're required to create for their class is a 15- to 20-minute documentary, at least Tozier and Tringale will continue to work through the summer to create a feature-length film of at least an hour that they can pitch to film festivals around the country.
Once it's finished, they'll also work with FSU professor John Chetro-Szivos, an adviser to the World Health Organization, to see if it can go even further, Tringale said.
Visitfacebook.com/PANDASdocfor further information or to donate to the project.
Follow Alana Melanson atfacebook.com/alanasentinelor on Twitter @alanamelanson.
Read more:http://www.sentinelandenterprise.com/topstory/ci_22719804/group-fsu-students-filming-documentary-often-misdiagnosed-disease#ixzz2Mkj2PSGM
