Woman with Sunlight Allergy Runs Freely After Breakthrough Clinical Trial

A woman with a rare genetic disorder that causes severe reactions to sunlight has found new freedom through a clinical trial. The medication has allowed her to run outdoors without the painful symptoms she once endured. For years, she suffered from burning, itching, and pins-and-needles sensations on her hands, feet, face, and other exposed areas whenever sunlight touched her skin. Determined to run, she trained at 4 or 5 AM, after dusk, or fully covered in bulky clothing. Despite these challenges, she completed eight half marathons and one full marathon.

Now, as part of a clinical trial for bitopertin, she no longer needs to hide from the sun or wear protective layers. The treatment has enabled her to run at any time of day without reactions. She is training for Grandma’s Marathon in Duluth, Minnesota, where she plans to run alongside family and friends and enjoy the scenery of Lake Superior. She aims to prove to herself and her younger self that no obstacle is insurmountable. The marathon will mark another milestone as the first person with her condition to run such a race while allergic to sunlight.