ARVADA, Colo. -- Dani Ball was diagnosed with epilepsy at age 12.
She said doctors initially thought she had Attention Deficit Disorder.
"My teachers told my parents, 'She's not paying attention in class.'"
Ball said she didn't have seizures, per se, but was often found staring into space.
It was only after doctors prescribed Ritalin, she said, that she experienced a Grand Mal seizure, and was then diagnosed with the neurological disorder.
Ball recently learned that some friends she grew up with also have epilepsy.
They grew up in neighborhoods to the east of Rocky Flats.
Now, Ball is on a mission to try to find out how many others who grew up in those neighborhoods have the same disorder.
She put out a request to hear from others, on Facebook, and started keeping track of where they lived, how old they were upon diagnosis, and whether there was any previous family history.
In just a few days, she'd heard back from 28 other people.
She started mapping the responses. Most were in three clusters -- one in Broomfied, one in Westminster and another in Arvada.
"I was shocked, just shocked beyond belief," she said. "It's unbelievable to have that many people suffering from the same thing."
Ball discovered that in some instances there were multiple cases of epilepsy among siblings in families without a previous history of the disorder.
Ball's grassroots effort impressed Tiffany Hansen, the co-founder of Rocky Flats Downwinders, a nonprofit that advocates for people negatively impacted by living near the former nuclear weapons plant.
"The thing we need to talk about," Hansen said, "is that she just started this, like, 3 days ago. There are nearly 30 people in a short period of time, that she reached via Facebook."
Hansen's group is behind and ongoing health survey that looked into cancer rates near Rocky Flats. That survey showed elevated levels of certain rare cancers.
The Colorado Department of Public Health and Environment told Denver7 last January that rates "were not significantly different than expected, based on cancer rates in the remainder of the Denver metro area."
When asked about epilepsy, CDPH&E spokesman Mark Salley said, "Epilepsy is not something CDPHE has looked at. While there are a few studies that have looked at these types of outcomes related to higher dose radiation exposure (i.e., atomic bomb survivors, radiation treatment, etc.,) we are not aware of studies that have looked at these issues at lower radiation exposure levels."
Hansen says Ball's grassroots findings merit a scientific study.
"People always say, 'how are you going to make a connection?' But the Centers for Disease Control will pay attention when there are clusters of certain diseases and cancers in certain areas," she said.
According to the Epilepsy Foundation of Colorado, the cause of nearly 60 percent of all cases of epilepsy is unknown. The remaining 40 percent of cases are typically caused by:
- Brain tumor and/or stroke
- Traumatic brain injury – the more severe the injury, the greater risk of developing epilepsy
- Poisoning – lead poisoning or substance abuse
- Infection – viral encephalitis, lupus erythematosus, meningitis
- Maternal injury – infection or systemic illness that affects the developing brain of a fetus during pregnancy
When asked why it's important to know what may be causing the cases in Ball's neighborhood, Hansen replied, "So people understand. Otherwise, you just have people who are sick and suffering individually at home. They're not connected to the greater community and they're not thinking about what could be in the environment causing this."
Hansen said if the epilepsy is related to Rocky Flats, "some of the elements used at the plant have long half lives."
She said that could have an impact on the new communities that have been, or are being, constructed in that area.
Ball asks anyone who would like to share their story about epilepsy to contact her at firstname.lastname@example.org