Youth psychosis won’t destroy our future. Not Today.

Daring to feel hopeful

In many ways, the life and near death of Alex Stewart is what this campaign is all about. A gifted computer science student, he had been accepted into a highly competitive program at Waterloo University and was just getting ready to make his own way in the world when mental illness took over his young life.

"It’s all very jumbled,” says Alex, 24, about his memory of that time. “I have memories of saying things to people in high school and people reacting strangely, saying ‘that didn’t happen’. I remember locking myself in my room for about a year after high school. I didn’t have the will to get up and go downstairs for breakfast or dinner. I just couldn’t. Although my family has been incredibly supportive, in the beginning my behavior definitely caused some conflict. Because no one, including myself, understood what was going on. Objectively I guess I was depressed because I was sleeping a lot, but I don’t remember my suffering, which is probably a good thing that I’ve forgotten.”

“One of the things people don’t understand about having a loved one with a serious mental illness is that when it starts it is incredibly frightening,” says his mother Susan. “We don’t have the knowledge we have of other illnesses. It’s not easily diagnosed, so it can be going on for a long time before you really know what’s going on.  I had people tell me that this was normal teenage angst. I just had a bad feeling it was lot more than that.”

She was right. Alex was just a few months away from his first episode of psychosis.

Because of the seriousness of the disease and the time of life it typically emerges–in the late teens or early twenties–untreated first episode psychosis is a grave threat to human health and early intervention can truly be a matter of life and death. Compounding the danger is the hard truth that currently there is no way to detect psychosis before it emerges and no way to predict who may be at risk.

Even at CAMH, home to some of the best experts in youth mental health in the world, an accurate diagnosis for Alex proved elusive. After his psychosis emerged and he was diagnosed with schizoaffective disorder, it would take a few more torturous years of trial and error before an effective treatment could be found.

The hope is that some day soon, with the aid of state-of-the-art brain imaging at CAMH using PET tracers invented by CAMH scientists, a genetic risk for psychosis in young people like Alex can be identified in the brain before it emerges. In combination with other CAMH innovations like pharmacogenetics and neuroinformatics, diagnosis and treatment plans could be customized to the needs of each patient, giving them exactly what they need when they need it.

“When I look at the research that CAMH is doing in early intervention services and the possibility of predicting who will be most at risk for developing psychosis, that in itself will save lives,” says Susan, a former nurse who is directly involved in research as co-chair of the family advisory committee at CAMH. 

After finally finding a treatment that allowed him to manage his mental illness, Alex recently moved out on his own to complete the last term of his computer programming degree, daring to feel hopeful for the first time since his psychosis first emerged with renewed optimism about his ability to lead a rewarding and productive life. 

“There are people who don’t even make it to first episode clinics because what has happened has caused them to take their lives. I look at my son who comes from a background with mental illness in the family, and think there is probably a genetic component we can find there. If I could have said to my children when they were 14 years old that if they smoke pot it may be a trigger for psychosis, it would have given them more information in which to navigate their lives in a safe way.”

Now he wants to pay it forward.

“I’ve been in a lot of psych wards over the years.  I’ve seen the suffering first hand. So just to mitigate that suffering is a pretty simple answer to why I am doing this. I remember one patient one time I was in emerg.  She was just screaming and screaming. She seemed in such distress.  I went up to her and tried to say something, but she seemed scared by me. It was just terrifying. So if I could help someone like that in any way, that would be great.”

“This is not a hopeless diagnosis,” says Susan. “I didn’t always know that. This is an unprecedented time of hope. The beauty of the scientific research going on at CAMH is that it translates into patient care. It’s helping people in real time. There is a real connection with research and clinical care right now and not just in the future. Because people are suffering right now.”