He diagnosed his rare disease using Google. Now he hopes AI can do the same for others

If it hadn't been for a Google search 10 years ago, Ian Stedman may never have discovered he had a rare disease and, most importantly, wouldn't have known how to treat it.

Now he hopes the growing development of artificial intelligence will make sure others don't go undiagnosed for decades, like he did.

"I think [artificial intelligence] has potential to completely transform the health-care system," Stedman told White Coat, Black Art host Dr. Brian Goldman.

"I don't know if it's for better or for worse yet, but I do think it's a real important conversation for us to have about how to regulate it and how to make sure that what people are finding online is helpful instead of harmful."

Stedman, of Woodbridge, Ont., went 32 years of his life without being diagnosed. But by plugging his symptoms into an online search, he figured out that both he and his daughter might have a rare disease called Muckle-Wells syndrome.

A new program at CHEO, eastern Ontario's children's hospital in Ottawa, that harnesses the power of AI may have been able to detect the disease a lot faster. 

It says it's the first Canadian hospital to use AI to assist in diagnosing rare diseases, and Stedman and researchers at CHEO hope there are many more programs like it to come.

Ian Stedman, 43, grew up suffering from a skin rash, red eyes, migraines, arthritis and eventually partial hearing loss.

Despite doctor visit after doctor visit, there was no diagnosis. Stedman estimates he saw dozens of physicians during nearly 200 visits. He missed school and suffered at work. He never wore short sleeves because of his rash. He just lived with it.

But the birth of his daughter, Lia, who started exhibiting similar symptoms, made the situation a lot more serious. More doctor visits, more conversations with specialists and even reviewing medical journals still left Stedman without answers.

So he turned to Google — and after browsing thousands of photos, he found skin that looked like his, connected to Muckle-Wells syndrome.

After getting the diagnosis confirmed by Dr. Ronald Laxer, a pediatric rheumatologist at the Hospital for Sick Children in Toronto, Stedman's life changed. He was able to get treatment for himself and Lia. Every two months, Stedman and his daughter take medication through a syringe that keeps their symptoms at bay.

It means Lia, 12, hasn't had to experience those same symptoms the way he did.

"If you asked me what are the symptoms of Muckle-Wells, I used to be able to rhyme them off," Stedman said.