When Jennifer was 26, people started asking her why she was limping. An exercise enthusiast, she brushed aside the question. Then she noticed she couldn’t run laps in her kickboxing class. No problem, she thought — running wasn’t her thing. Next, she started falling behind some older women in Pilates class. By that time, she and her husband were planning on starting a family. Just to be safe, she decided to see a doctor.
Jennifer, a psychiatrist who asked that only her first name be published because she does not want her personal story revealed to patients, first saw a sports physician. He referred her to a podiatrist, who advocated surgery. Unwilling, she went to a physical therapist.
“You definitely have weakness,” she remembers him saying about her muscles. Though he didn’t think it was anything serious (“not genetic or progressive”), he sent her to a neurologist at UCLA. The medical fellow who examined her was a Persian Jew. He knew exactly what was wrong — it was genetic, and it was definitely progressive. read more