What Is Sickle Cell Disease Sickle Cell Disease is a serious, inherited disorder that affects red blood cells, causing the cells to change their shape. It can be a very painful disease. Red blood cells contain hemoglobin, a substance that carries oxygen from the air in the lungs to all parts of the body. Normal red blood cells contain hemoglobin "A". they are soft and round and can easily pass through tiny blood vessels. People with sickle cell disease have red blood cells that contain mostly hemoglobin "S", an abnormal type of hemoglobin. these cells become sickle (crescent) shaped, stiff and sticky and have difficulty passing through small blood vessels. When sickle shaped cells block small blood vessels, less blood can reach that part of the body. Tissue that does not receive a normal blood flow eventually becomes damaged. This is what may cause the complications of sickle cell disease. Normally, red blood cells live for about 120 days before new ones replace them. Red blood cells containing mostly hemoglobin "S" do not live as long as normal red blood cells. The early breakdown of the red cells decreases the amount of hemoglobin in the blood to carry oxygen, this causing anemia of which the disease is also know as, Sickle Cell Anemia. Any child with sickle cell disease needs close medical attention from their local doctor. The child's caregivers should receive instructions about the disease and understand his/her special needs. Understanding Genes Genes are the instructions that determine various characteristics and traits such as: eye and hair color or diseases such as Diabetes. We have two copies of every gene in our bodies. We receive one copy from our father and one copy from our mother at birth. There is now way to control which genes are passed from parents to children. the sickle gene (S) affects the red blood cells. What is Sickle Cell Trait? Sickle Cell Trait occurs when a person has one working gene (A) and one altered gene (S), they are also called a carrier. Sickle cell trait is not a disease. People with sickle cell trait cannot tell that they have it without being tested. How is Sickle Cell Disease Inherited? Sickle cell disease is inherited when a person receives an altered Sickle gene (S) from each of their "carrier" parents. Carrier parents have a one-in-four chance of having an affected child and a one-in-two chance of having a child who is a "carrier". Carriers of sickle cell are not affected themselves because they have a working (A) gene as well as an altered gene. Hospitalization and Related Issues Many children are hospitalized as a result of the complications of sickle cell disease. Hospitalization is a hard time for children and parents of children with sickle cell disease The infant/toddler or small child will need constant advocacy. The parents are expected to provide this for their child until they can advocate for themselves. Some your adults find it difficult to navigate the system and advocate for themselves. The school age child, on average, will miss 29 days of school per year due to hospitalizations and home recovery. This creates a dilemma for the children, parents, social workers and educators. Financial support to these families becomes necessary because of the economic hardship that often accompanies hospitalization. Meals and parking are two of the most commonly reported expenses that strain the budget while a child is hospitalized. Many families experience employment related issues such as medical leave. some have limited understanding of their rights and responsibilities during these trying times. Living with Sickle Cell - Spoken Word Video CBS Cares - Sickle Cell PSA Sickle Cell website for Kids links