Ian Stedman and his daugther Lia, 4. After failing to get answers from doctors, Ian used 'Dr. Google' to diagnose he and Lia with a rare disease called Muckle-Wells Syndrome.
Ian Stedman suffered from red eyes, migraines, skin rashes and joint pain all his life. Dozens of MDs failed to diagnose him. So, he lived with it. Then his daughter was born with the same symptoms. Desperate for answers, Ian turned to "Dr. Google" and well, you won't believe what happened next.Ian Stedman and his daugther Lia, 4. After failing to get answers from doctors, Ian used "Dr. Google" to diagnose he and Lia with a rare disease called Muckle-Wells Syndrome.
"Sooner or later I'd be covered in spots...The spots look like you have something severe wrong with you. For me 'cover up' is easier than explaining," Ian says.His daughter, Lia was born. Soon, she began to exhibit the same mysterious symptoms that plagued her father.At one point, she stopped walking and regressed to crawling due to joint pain. For the sake of his daughter, Ian knew he had to solve his medical mystery.
I've been in practice for 35 years, I've never had a story like this. I don't think I've ever had anyone come in with a rare disease and say, 'Doctor, this is what I have,' when he had seen probably 30 or 40 physicians.Lia and her dad Ian have been getting injections of a drug called Illaris for close to two years.
Both Ian Stedman and Dr. Laxer believe that there should be a registry for Muckle-Wells and the 7,000 other rare diseases that affect 3 million Canadians. They say it would give patients information and support - and give doctors a place to turn to when their tests come up empty and they run out of ideas.
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