Martha Bryce was 32 when she had her first “grand mal seizure”. “Not unusual,” her doctor said. “Many people have a one-time seizure, never to be troubled again.” But then Martha developed another perplexing symptom: When eating, she would often feel faint after the first few bites, nearly black out, and then feel fine again. If Martha hadn’t been a nurse–and found an organization known as STARS–she might never have gotten to the truth.

Martha was visiting the Hoover Dam when she had what appeared to be a grand mal seizure. Neurological testing came back negative, so she and her physician hoped it was a one-time event. Soon afterward, however, Martha began to notice that she often felt faint when eating. After the first few bites, she would “swoon”, nearly black out, and then feel fine again. It happened so frequently that she developed a coping mechanism: “I would lower my head as soon as I began to feel lightheaded,” Martha says. “My husband and co-workers became accustomed to seeing me go through this strange ritual during meals.” Eventually, Martha did begin to black out briefly and then she had a second seizure. Although she was initially given a diagnosis of epilepsy, the pieces of the puzzle just didn’t seem to fit together. One day, Martha happened upon the website of the STARS organization and that was the beginning of her journey to a correct diagnosis. Eventually, she learned that she had a condition known as “swallowing syncope”, a rare problem in which the act of swallowing triggers a chain of events that causes the heart to stop beating briefly. A pacemaker stopped the symptoms completely. Martha shared her story with NORD for Rare Disease Day 2009. Since then, she has been featured in a story in the Washington Post and an episode of the Mystery Diagnosis TV show. Martha hopes that telling her story may help others obtain a correct diagnosis with less delay.