Adrienne Shapiro is a patient advocate, co-founder of the Axis Advocacy SCD. Like the three previous generations of mothers in her family, Shapiro gave birth to a child born with sickle cell disease. Yet the news came as a complete surprise - not because she was unaware of her family history, but because she had received a false negative result from her sickle cell disease/trait test. It wasn’t until her daughter Marissa was six months old, and her family got word of her diagnosis in a letter from the California New Born Screening Program, that she knew. “It was shocking to receive the diagnosis in the mail. We did not believe it at first.”
The confirmation marked a turning point in Shapiro’s life. She now had a single goal – keeping her daughter Marissa alive until science found a cure. She became a patient advocate and co-founded the Axis Advocacy SCD patient education and support website.
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