Runner with Rare Disorder Finds Freedom in Groundbreaking Treatment Before Marathon

A runner with a rare genetic disorder is preparing for Grandma’s Marathon in Duluth, Minnesota. Her condition causes severe, painful reactions to sunlight, forcing her to train only at dawn or dusk. A new treatment has changed her routine and her outlook on the sport. She first took up running but had to cover her skin completely to avoid exposure. The disorder made it impossible to run in daylight without pain. She still managed to complete eight half marathons and one full marathon under these restrictions.

Now, bitopertin has allowed her to train at any time of day without reactions. She is part of a clinical trial for the drug at Mayo Clinic. The treatment has eased her anxiety about hiding from the sun or wearing heavy clothing.

She looks forward to running alongside family and friends during the event. The race will also give her a chance to enjoy the scenery of Lake Superior. She will take part in Grandma’s Marathon with greater freedom than before. The drug has enabled her to run without fear of sunlight. Her participation in the trial and the race highlights her determination to keep running despite her condition.