Rare sun disorder kept Saskatoon man indoors for decades until a clinical trial changed everything
Burning, itching and unbearable pain.
That’s what Chris Kinnear felt every time he stepped into the sunlight.
The 53-year-old man was born with erythropoietic protoporphyria (EPP), a rare inherited metabolic disorder that causes immediate burning and severe pain when the skin is exposed to sunlight.
Kinnear grew up in Saskatoon, one of Canada’s sunniest cities, and was forced to spend most of his life indoors, hiding his symptoms so no one could tell.
“As your time in the sun increases and that exposure increases, that tingling sensation turns into an itching sensation, turns into a burning sensation. It becomes excruciating,” he told CBC. 306.
Kinnear said that if he were to go out in the sun, warning signs would appear within about two minutes and the reaction could last for several days.
He began feeling the effects of the rare, invisible condition at the age of three, he said.
During his childhood, his parents spent a lot of time visiting family doctors, trying to find the cause of his symptoms through blood tests and various medications.
“Even though you know the symptoms very deeply and you know what’s causing it, you have no idea what’s going on,” Kinnear said.
He works as a contractor. Until recently, they had to limit their work to night shifts or mainly indoor jobs.
‘normal will remain normal’
The diagnosis finally came to Kinnear in his mid-30s, when he visited a local doctor who coincidentally was familiar with the disease.
Although a Saskatoon doctor was eventually able to identify the cause of her symptoms, Kinnear learned that there was no cure; Avoiding the sun was their only option.
“It was kind of a double-edged sword,” he said. “You know you have a name to put it on, but you have the reality that normal will be normal. That’s what you have to look forward to.”
He kept his condition private because there was always a question in the back of his mind about whether or not people would believe him, “especially with something so rare and especially with something that has such a bad reaction before you can even physically see it,” he said.
But Kinnar was not ready to give up hope of a better life.
He connected with rare disease organizations in Canada and the US, which ultimately led him to a clinical trial taking place at Mass General Brigham in Massachusetts.
It was there that he met Dr. Amy Yang, attending physician at Massachusetts General Hospital and assistant professor of medicine at Harvard Medical School. Yung also remains with the EPP; He was diagnosed at the age of 13.
For the first time, Kinnar had found someone who understood both science and struggle.
30616:43A Saskatoon man has a rare disease that makes it painful to be in sunlight.
We are going to learn about a rare disease that makes exposure to sunlight painful. A man from Saskatoon has been struggling with this problem for decades. 306 takes an in-depth look at what the disease is and how clinical trials are doing well now.
‘Much more common’
About one in 100,000 people are diagnosed with EPP, but “it’s much more common than that,” Yeung said.
“It should be about one in 17,000.”
Jung said several factors make it difficult to diagnose, including its rarity and the fact that no visual cues exist between reactions. Testing for EPP is different from other conditions in the same class, called porphyrias, he said.
“That’s why some doctors send the wrong tests. Many patients don’t get answers for years and are diagnosed accidentally, as was the case with Chris.”
BitopterinThe drug used in Yueng’s medical trial reduced the amount of protoporphyrin in the blood of patients with EPP by about 50 percent, resulting in dramatic improvements in light sensitivity.
“Chris, he’s an example of that,” Yung said. “Essentially the results in all the studies I’ve seen were pretty similar. It’s very exciting.”
127 minutes in the sun
Kinnar started the medical trial last year. He said that within the first four days he felt relief, with sensitivity to light significantly reduced.
“It’s almost like a light switch went off,” he said.
Before starting Bitopterin they had to track their daily sun exposure every day for two weeks. His daily performances usually averaged eight to 10 minutes, he said.
On June 14, 2025, his world opened up completely.
“I was out on my deck for 127 minutes,” Kinnear said.
“It was amazing. I mean, to have that moment, you know, you’re going to see kids playing ball, you’re going to do whatever you want, whatever.”
Another big moment came on Canada Day weekend, only a few weeks into the trial. Kinnar was at his best friend’s cabin, where he usually spent most of his time worrying about finding shade.
At one point during the day, his friend urged him to go inside and stay out of the sun.
“I said, ‘I don’t need this,'” he said, recalling the tearful moment.
Kinnear said he is now working on rewriting his personal bucket list, which this time includes all the things that “you reject early in your life because they are not attainable and realistic.”
He said that he has lost a lot of time to provide for his family.
He said he is sharing his experience with EPP to raise awareness and provide hope to those who also have the rare invisible disease. He said, if he can help one person, his story will have an impact.
Yeung said findings from Phase 2 of the clinical trial have been published and the trial is now in Phase 3, which is expected to finish this year.
The findings will be analyzed and then hopefully presented to the FDA for approval, he said.
