Facts

SCD affects thousands of people living in Pennsylvania and affects 100,000+ people in the United States alone. There are over 300,000 infants born each year, worldwide with SCD. SC Disease and SC Trait are common in many ethnic groups including African, Arab, Asian, Black, Caucasian, Greek, Indian, Italian, and Latino. Trait Facts: 1 to 3 Million Blacks in the USA have the Trait; 100 Million Blacks Worldwide have the Trait.

While efforts over recent years have increased life expectancy and improved the management of SCD, the average life expectancy for SCD patients remains 20 to 30 years less than that of those living without SCD.

SCD is accompanied by a varying severity of acute pain (sudden onset) and chronic pain and can damage organs such as the eyes, brain, lungs, heart, kidneys, liver, and joints.  It can have  a devastating impact on daily activities, school and work attendance and social interactions; it causes fatigue, sometimes devastating; the emotional and psychological impact can be devastating as the recurrent acute painful episodes and chronic pain.

Some suffer in pain, and  do not share what they are going through; many are embarrassed because so many do not understand the disease- they are stigmatized.  Due to this chronic illness with unpredictable painful episodes, many must take days off from school and work. They often choose to tell others that  they are "tired" and "just not up to going out" because they know most people will not understand. And, when severe pain events occur, their pain is often under treated or not treated with a narcotic at all as indicated because they are often labeled as drug addicts or drug seekers.