June 19th is World Sickle Cell Day. We sat down with Andrea Matthews, a parent of a child with sickle cell disease to share her family’s journey with this disease. If you’re unfamiliar with sickle cell disease (SCD), you may be surprised to learn that over 275,000 individuals a year are diagnosed with the condition in the world. SCD is an inherited blood disorder in which the body doesn’t produce enough healthy red blood cells to carry adequate oxygen throughout the body. The condition causes anemia, episodes of pain, swelling of the hands and feet, frequent infections, delayed growth, and vision problems. It has been estimated that approximately 100,000 people in the United States are affected by SCD. Related story

Roland Martin talks with Dr. Yvonne Carroll, Director of Patient Services, St. Jude Children’s Hospital, about sickle cell disease. June 19 is World Sickle Cell Awareness day. Related story

Growing up, Vismel Marquez wanted to join the police department and eventually work his way up to detective. Now almost 22, Vismel, says he knew that his dream job wasn’t to be. It wasn’t that he lacked the drive, courage or smarts. The fault is in his genes. Vismel was born with sickle cell anemia. This inherited disease causes a mutation in hemoglobin, the oxygen-carrying protein in red blood cells. The defective hemoglobin causes some red blood cells to shape-shift, transforming from healthy donut-shaped cells that move easily through the bloodstream into scrawny, sickle-shaped versions. And because these misshapen red blood cells are rigid and sticky, they can’t move through the small blood vessels (microvasculature). Related story

Mercy Mendoza was born in Honduras, and for the first three years of her life, she suffered from a condition that caused swelling, pain, and immobility and nearly destroyed her health. Multiple doctors tried to help but failed, and fearing the worse, Mercy’s grandmother went and bought a burial plot. Finally, a doctor who had been trained in the United States recognized Mercy's condition: It was sickle cell disease. Knowing that their daughter would need special care, Mercy’s parents brought her to the United States and they found Mercy the pediatric care she needed to treat her disease. Years later as a teenager, Mercy became a counselor at a camp for kids with sickle cell disease. There she taught others to manage the condition that nearly claimed her life. Today Mercy lives in Houston with her parents, brother, and two sisters. She is the only one in her family who has the disease. Her brother and one of her two sisters have the trait. She currently volunteers for the Sickle Cell Association of Texas Marc Thomas Foundation, where she also conducts specialized outreach to the Hispanic community in Texas to raise awareness about the disease. Related story

Cassandra Trimnell is a patient advocate, Executive Director of the Sickle Cell 101. When Cassandra Trimnell was born in 1987, she was the first child diagnosed with sickle cell disease through Iowa’s newly implemented newborn screening program. “My mom, like most others, didn’t know she had the sickle cell trait until her beautiful baby was born with this ugly disease,” said Trimnell. But because of this newfound awareness, Trimnell was able to get the attention and care she needed, and she grew up to become a fierce advocate for others with the condition. Trimnell founded and is the executive director of Sickle Cell 101, a non-profit organization that specializes in sickle cell education, primarily through social media. She is convinced that a lack of knowledge about the disease—not only among the population at large, but among the medical establishment and patients themselves — has led to a disturbing silence about the disease. “I want people to realize the importance of knowing their trait status,” said Trimnell. Related story

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. Related story

Beverley Francis-Gibson is a President and CEO of the Sickle Cell Disease Association of America (SCDAA). Francis-Gibson knows about the pain of sickle cell disease- not as a patient, but as a family member who lost a loved one to the illness. She also knows about the harm done by the silence, rooted in ignorance and sometimes even shame, that is associated with the condition. Born in St. Thomas, U.S. Virgin Islands, in a tightknit family, she witnessed the misery endured by her cousin Vincent, who was born with sickle cell disease and was often so sick he couldn’t play with the other children. “It was very hot, so he remained indoors most of the time,” said Francis-Gibson. “He was hospitalized a lot, had jaundiced-looking eyes and seemed sickly to me all the time.” She was in high school when Vincent passed away. Because of her own family’s ordeal, Francis-Gibson became an advocate and, since March, the President and CEO of the Sickle Cell Disease Association of America. Related story

Wanda Whitten-Shurney is a pediatrician, advocate, CEO and medical director for the Sickle Cell Disease Association of America (Michigan chapter). Dr. Whitten-Shurney has a long and accomplished history of helping children and their families manage sickle cell disease. A pediatrician by training, Dr. Whitten-Shurney has provided care for children living with sickle cell disease at Children’s Hospital of Michigan for the past 30 years. She is director of the coordinating center for Newborn Hemoglobinopathy Screening Program for the Michigan Department of Health and Human Services. Wanda was the driving force in the establishment of the Sickle Cell Donor Program for the American Red Cross of Southeastern Michigan. Currently, she is CEO and medical director of the Michigan chapter of the Sickle Cell Disease Association of America (SCDAA). Her father, the late Dr. Charles Whitten, was one of the co-founders of the national SCDAA and a pioneer in sickle cell education and outreach. Related story

Linda Thomas is a health care educator, patient advocate, minister, president and co-founder of the Sickle Cell Association of Texas Marc Thomas Foundation. In 1997, Linda and her husband, Pastor Marc Thomas, began the Sickle Cell Association of Texas. Pastor Marc suffered from sickle cell disease and passed away in 2005 at the young age of 46. As President and CEO of the organization that would later bear her husband’s name, Linda is not only keeping her husband’s legacy alive but providing vital services to the sickle cell community in Texas, including health education to patients and health care professions as well as advocacy on behalf of patients. Linda was instrumental in getting legislation passed for newborn sickle trait testing in the state of Texas. She currently oversees three office locations in Houston, San Antonio, and Austin. Related story

Carolyn Rowley is a psychologist, patient advocate, founder and executive director of Cayenne Wellness Center and Children’s Foundation. From a young age, Rowley always had a strong faith and dreamed of one day working as a missionary to improve people’s lives. In a sense, she has fulfilled that dream by embarking on what she considers a divine mission as an advocate for those living with sickle cell disease in California. As founder and executive director of Cayenne Wellness Center and Children’s Foundation, Rowley has spent nearly 20 years working to reduce the barriers and discrimination faced by individuals with sickle cell disease while increasing awareness among patients, providers, and the public. But she’s not just an advocate; Rowley also is a patient. She experiences the very struggles of those who live daily with the painful disease and yet is determined to create a brighter, more equitable future. Related story