"Some of these things I'm having to say 'I don't know' to, hopefully I will know," Roach said.
For now, doctors say the most important thing is to stop the damage to people's vision before it becomes permanent. In IIH, the extra cerebral fluid in the brain can push on the optic nerve, slowly diminishing a person's peripheral vision.
Doctors can tell something is wrong with a visit to the ophthalmologist and often can see the swollen optical nerve, but many people don't know to come in until it's too late.
"That can be such a gradual thing that the individual doesn't appreciate it until it's really bad," Roach said. "Often times you don't get that vision back -- sometimes they don't know it until they've run into a door."
Specialists might perform an operation called optic nerve fenestration, which leaves a small window in the sheath of the optic nerve to release pressure and can sometimes slow vision loss.
"It's often possible to control this with weight loss and medication. We mostly see this in females that are obese in the adult age group," Remler said. "Because childhood obesity is on the rise, we see it more and more in adolescents."
"I saw a 16-year-old girl who was not treated in time and lost her eyesight," said Remler.
Ashley has luckily stemmed any major vision loss from her IIH. But she has had 30 operations -- including holes drilled into her skull, a shunt into her spine and a shunt into her brain to relieve the pressure.
Her headaches and pain are so severe that she only goes to school for two hours a day before coming home to rest and work with a tutor for the rest of the day. She sometimes has to go to the emergency room for pain medication strong enough to stop it, but on normal days she tries yoga and some relaxation time with her pet chihuahua Zoe.
"It's hard for her for to keep up with friends and she can't be involved in too many sports or activities because she can't keep up with it," said Diane Ashley, Lauren's mother.
Diane Ashley has joined together with other families who travel to Columbus from across the United States to get care. She has since developed the activism group for her daughter's condition, IH Gray Matters.
Diane Ashley said she was ecstatic to hear about a single center where children with IIH could get all their care.
"I've not been able to work full time since she was diagnosed," said Diane Ashley, who works part time as a nurse. "There isn't a week that goes by that we don't have a doctor's appointment."
Her daughter thought it might be a way to buy more time in her life.
"I thought it would be a great idea," she said. "I go to maybe two or three doctors appointments every week and if you could get it in at all appointments it would be wonderful, so you don't live at the hospital."