Families and Friends

A Guide for Families and Friends of Individuals with Sickle Cell Disease

Information in this section is intended to give you some insight about individuals with sickle cell disease. You may have a friend, family member, colleague, co-worker, student or classmate who has sickle cell disease, or you may not be aware that they have sickle cell disease. Some individuals with sickle cell disease would rather let people believe that their symptoms are a result of arthritis, or would rather hide their disability. This is not because they are ashamed of their disability; but rather, they would prefer to be treated as normal people.

Sickle cell disease is an inherited blood disorder. It is not a virus and it is not contagious. An individual acquires sickle cell disease from genes passed to him or her by both parents, much in the same way as one inherits blood type, hair color and texture, eye color and other physical traits.

Major symptoms of sickle cell disease include fatigue, anemia, pain crises, and bone infarctions that can occur at any age. Infarction occurs when part of an organ dies due to lack of blood supply. Other symptoms that may occur in an individual’s early years of life include fever, abdominal pain, bacterial infections, painful swelling of the hands and feet (dactylitis), and sudden pooling of blood in the spleen (splenic sequestration). Symptoms of adolescent to older individuals include leg ulcers; aseptic necrosis (localized bone death); eye damage; gall bladder disease; and pain due to injury of bone, muscle or internal organs.

Individuals with sickle cell disease can live normal lives; however, many suffer from anemia leaving them vulnerable to tire readily. This could precipitate a decrease in oxygen intake. Therefore, they should not overexert themselves. Frequently, they may become incapacitated by severe pain. This pain can last as short as a momentary discomfort or as long as a week or more of chronic pain. The pain is caused by blockage of blood supply to the affected areas of the body. Often these pain episodes result in the need for emergency care and can warrant a prolonged hospitalization of a week or more. After recovery, the individual with sickle cell disease can usually return to his or her normal routine.