Margarita Soto: A life with PNH
Margarita Soto had her first blood transfusion to treat her anemia at the age of 16, when she was pregnant with her second child in Puerto Rico. She began to notice her urine was dark soon after, and by the age of 18, in the worst of her hemolytic episodes, pain and exhaustion from her anemia kept her from walking up stairs, let alone playing volleyball or basketball with other kids her age.
COURTESY OF DR. BOB SIEGEL
She moved to Springfield, Massachusetts, then Hartford, Connecticut, to stay with relatives there and seek better medical care. But the steroid treatments she was given did little for her. In 1999, she found hematologist Bob Siegel when her usual hematologist made her wait two days for an appointment and she "decided to cross the street and...