Sickle Cell Disease

Sickle cell disease describes a group of hereditary blood disorders that have a significant impact on the lives of affected individuals. Sickle cell disease is usually chronic and challenging to manage. It requires affected individuals to face a lifetime of ongoing treatment, starting with twice-daily penicillin regimens from six months of age to five years and progressing through ongoing, lifelong treatments into adulthood depending on an individual's unique situation. Although long-term outcomes are much improved in recent years with the development of the drug hydroxyurea and even stem cell transplant, there is still much information for consumers to untangle. Due to the complexity of treatment options and the complexity of the underlying genetic information, families affected by sickle cell disease need to know where to find reliable information online that can help support understanding and informed decision making.