FRIENDS & NEIGHBOURS
Lindsay woman with rare condition sees new possibilities open
WILLIAM McGINN Writer-at-large
Joye Daniels, Megan’s grandmother, recalled one Ever heard of porphyria (por-FEAR-e-uh)? Or maybe doctor telling Megan she needed psychiatric help. “It a specific kind of it, erythropoietic protoporphyria (EPP)? was devastating,” said Joye. Me neither. In fact, some doctors have not heard of it and Megan’s mother, Robyn Mathe, had to fight to ensure even disbelieved Lindsay resident Megan Nicholas when her daughter could stay in for recess when necessary, she told them she felt like she was burning up, despite no too. outward symptoms. “There have been times my mom and I have gone to Along with her family, Megan, who has lived with the the zoo,” said Megan, “and we’d have to go on the days condition her whole life, has had to endure accusations, it was cloudy. There has never been any planning on it. isolation and disadvantages that few do. But now the It’s more like, ‘Okay, it’s cloudy right now, let’s go right 19-year-old is part of a medical trial nearing completion now.’” that could offer a breakthrough for her and others facing About a year and a half ago they the same issue. noticed a social media post from the Porphyria is a rare group of disAmerican Porphyria Foundation, noting orders that disrupt the chemical steps a scientific trial was underway to deto the production of a substance called velop a new medicine. COVID delayed heme, which is vital for all the body’s things but two phases were completed organs. Only about one in 74,000 is in the U.S., with good results. Megan — diagnosed with the EPP disorder one of only 10 Canadians — has been Megan has; hers primarily affects the participating in the third and final trial skin. “When I go out in the sun,” before the new medicine is sent for Megan explained, “my skin will start approval. to feel like it’s burning, I’ll get itchy, Twice now Megan and her mother my skin gets red, and it gets hot to have visited the Kaye Edmonton Clinic the touch. I also get blood clusters, in Alberta’s capital as part of the trial. like little red blotches. Usually my When she returned home with the hands and feet are the first to feel the new pills, she learned to keep a log effect of the sun, and the effects can every time she went out into the sun. last for 12 hours to even a few days.” The family hopes to hear soon about EPP causes sensitivity to the the trial results. point where even sunlight that passThis fall, Megan is going to Fleming es through window glass or sunlight Megan Nicholas. College in Peterborough for a threeduring a cold winter can cause a reacyear program in child and youth care. As she nears this tion. Megan told the Advocate she at least has been lucky next chapter in her life, she may have not only helped to have friends who stick by her, including a best friend herself, but others like her who have endured a chalwho would stay in with her for recess at school and lenging disorder for so long. always understood when she would have to head inside, but the rest of the world has not been as kind.
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