One of the first things every set of parents does when their precious baby is born is start looking for which traits have been handed down. Does she have her mother’s eyes or her father’s? Does he look more like the dad’s side of the family or the mom’s?They don’t usually expect their child to diagnose their OWN disease.
But that’s what happened to Canadian Ian Stedman.
He’s suffered from mysterious fevers, headaches, strange rashes on his body, and vision problems pretty much all his life. Doctors never could diagnose him.
But it’s one thing when you’re the person going through a health challenge. It’s a completely more intense experience when you see your CHILD facing the same thing.
Cue mega protective instincts!
Stedman noticed his daughter having the exact same symptoms and vowed to find out what was going on. He researched medical journals and found information on Muckle-Wells, a condition that can be found on rare disease rosters. Muckle-Wells syndrome is a form of CAPS (Cryopyrin-Associated Periodic Syndrome), a group of seldom-occurring, inherited, autoinflammatory diseases with similar symptoms and genetic components. A specialist confirmed that Muckle-Wells Syndrome is what he and his daughter were suffering from.
Stedman’s story was an emotional illustration that Canadian citizens faced unmet needs when it came to rare diseases. A local politician, Michael Harris, highlighted the Stedman family’s plight as one of many reasons why the government should address those needs and make the country’s health care system more attentive.
“For far too long, rare disease sufferers have endured endless hurdles,” Harris said, while promoting a website called www.treatraredisease.ca.
“Many have gone deep into debt to pay for treatments and medications the province doesn’t provide or won’t cover and feel abandoned by their government.”
But luckily, Ian Stedman and his daughter may end up being the faces of change. They’re fortunate that they have private insurance that covers the cost of treatment for their Muckle-Wells symptoms. The two are being treated with Ilaris, a medicine that costs $18,000 per injection–they receive their injections every 8 weeks.
Once you do the math, you realize that many, many Canadians dealing with rare diseases may not share the Stedman’s insurance good fortune. Here’s hoping that their heartwarming story helps ignite real change in the country!