Patient advocate, writer, adviser and consultant
Her story: Shirley Miller was born in 1956 and grew up in Riviera Beach, Florida. Diagnosed with SCD when she was 3, her parents were told she wouldn’t make it past 13. Her mother never shared that information with Miller, who, nevertheless, lived in a fearful state for many years, convinced that 30 surely would be the end of her life. Sickle cell patients were not supposed to get old.
When her 30th birthday came and went, she decided to “make my own way, and move out of my comfort zone.” She moved to Texas, and had a blossoming professional life, while becoming a knowledgeable advocate for people like her and for their families. Her novel, The Stranger within Me, paints an image of SCD as a stalker waiting for its time to strike. But the times between the strikes grew longer and longer. Miller had decided to stop living in fear of the next crisis and how it would end. She has participated in several NIH clinical trials and is always encouraging others, especially minorities, to take part in medical research. She is the spokesperson for the U.S. Food and Drug Administration’s Year of Diversity in Clinical Trials Campaign.
Unimaginable hurdle: Miller married young. “They told me that, with sickle cell, I shouldn’t have children, and I tied my tubes.” This dealt a major blow to Miller’s self-esteem, already quite low because she felt she couldn’t plan for the future. “I felt worthless. Who would want someone who couldn’t have any children?”
How she survived: “I was sickest as a child, but I never wanted to be limited or different. I was hungry for information and sought it fiercely.” Once she moved to Texas, “everything they told me I wouldn’t be able to do, I did it.” Her involvement and advocacy for the sickle cell community was transformative for her. “I wasted too much time thinking about the end. I used to dream about dying. Now, I tell parents to let their kids live a normal life and don’t worry about life expectancy.”
Her motivator: She currently works full time in an Adult Comprehensive Sickle Cell Center in Charlotte, NC, and volunteers for the Sickle Cell Adult Provider Network to bring physicians together for more access to care for the growing number of people living longer with this disease. “There are many pediatricians, but not enough adult providers, because everyone thought that most people wouldn’t live into adulthood. So, we need to recruit more primary physicians into this field.”
Why she is optimistic: “I am very excited about the new drugs that are finally coming to the marketplace. Living with sickle cell has been difficult, but for me, it turned out to be a good story.”