During a conference in Minneapolis next month, researchers will share data and ideas on the most-effective treatments for Obsessive Compulsive Disorder with families and doctors.
Ashley Bystrom, 13, began to be plagued by thoughts that she could die from germs when she was just 8 years old.
"It started out as just I had to run down to my bedroom and if I saw anybody on the way I'd have to run back and take another shower because I thought I was contaminated then," Bystrom said. "And then it turned into I had to brush my teeth in a certain routine and stuff and have my mom throw my towel up over the edge of the shower. I had to wear slippers so my feet didn't touch the ground [and] had to dry off in my bedroom and stuff."
Her family accommodated her strange requests at first thinking it was just a phase. Then they tried to talk her out of her rituals saying there was no way that she was going to get sick from the family's towels.
Finally, Ashley's mother Jacquie took a sterner approach.
"I would tell her just stop it," Jacquie said. "I mean in a way, now you look back and you think boy I was a bad mother because I just would say just get in the shower. Just take your towel and stop being this way."
That didn't work either. In fact things just got worse. That summer Jacquie said her daughter didn't leave the house - not even once.
"There were days I would say to her, 'Just step outside. The sun is shining. Come outside.' And I would pull her physically out onto the step," she said. "She would fight me and say, 'No. I can't go outside.' Because the outside was full of dirt and germs."
Researchers still don't know what causes the debilitating mental condition known as Obsessive Compulsive Disorder or OCD. The disorder affects an estimated 2 to 3 million adults and as many as a million children and teens.
Most of us have some compulsions; perhaps it's checking your iron multiple times after using it to make sure that it's off or washing your hands every time someone shakes them. But those behaviors don't rise to the level of an obsessive compulsive disorder unless they disrupt your life by making it impossible to go to work or leave your home.
People with OCD develop their rituals to cope with a terrifying fear that's rooted in illogical thoughts.
The Bystroms had no idea what was wrong with Ashley until they saw a television show on OCD and recognized the behaviors. They took her to a psychologist and OCD was confirmed.
Psychologist Renae Reinardy, who diagnosed Ashely, wouldn't talk specifically about the case. But she said, in general, the most effective way to treat OCD is a technique called Exposure and Response Prevention. In effect, a patient is forced to confront the thing they fear the most through a process called habituation.
"Habituation is just basically fizzling out of emotion through repetition," Reinardy said.
So if a patient is scared that they will get HIV from a doorknob, Reinardy asks them to touch the doorknob and not wash their hands afterward. After a while, she said the experience will fail to generate much of a response.
"If I tell you a really funny joke right now you're probably going to laugh. If I tell it to you five times in a row, it's less funny," she said. "One-hundred and fifty times later it's really not funny at all."
The technique sounds ridiculously simple and it's similar to what Ashley's family tried, but Reinardy said a lot of patients can't summon the strength to even begin the exposure therapy until they are prescribed anti-anxiety medications for a few weeks. That's what Ashley did.
Approximately 70 to 75 percent of OCD patients respond to this type of treatment said psychologist Jeff Szymanski, Executive Director of the Obsessive Compulsive Foundation in Boston. He said that the success rate is a major advance from the days when talk therapy was one of the main treatments for the disorder.
Before he came to the Foundation, Szymanski worked at an OCD Institute in Boston. He said he was always amazed when he asked his patients how long they had been in talk therapy.
"I would have them raise their hand, 'How many people have been in treatment for a year and didn't have any benefit?' And people raised their hand and three years and five years and ten years and fifteen years and twenty years," Szymanski said. "The number of people that had their hand raised at twenty years of out-patient talk therapy, that we know as a first-line treatment really doesn't do a whole lot for OCD, it's really heart-breaking."
But prospects are improving for OCD patients. Ashley Bystrom wants people to know that she's living her life again.
As she tromps through a manure-pocked pasture to get her horse Baloo, it's remarkable to think how far she has come from that awful summer just a few years ago.
"I know if I'd got him any earlier I wouldn't have been able to even see him because he gets all dirty and stuff from rolling in the mud and everything," she said. "You have to pick out his hooves which are filled with dirt and stuff. And I do that now, which I would have never been able to do that then."
Ashley's family is volunteering their time during the conference to help spread the word about a new OCD affiliate office that's opening in the Twin Cities.
The office will help connect patients to the handful of mental health providers in Minnesota who are trained in treating OCD. It will also provide training materials for providers who want to learn the best ways to treat the disorder.