What can I do to help preventhealth problems related to sicklecell disease?Parents of children with sickle cell diseaseshould make sure that their child:

o Gets regular health check-upso Drinks plenty of fluidso Gets enough oxygeno Gets plenty of resto Takes daily medications and

vitamins (including folic acid)o Avoids getting too hot or coldo If your child is under the age of six,

make sure he or she takes penicillinevery day.

Your child’s doctor can answer any otherquestions about risks your child may havewhen playing sports or other activities.

Who can I talk to about sickle celldisease?Indiana Hemophilia & ThrombosisCenter8402 Harcourt Rd., Suite 500Indianapolis, IN 46260(317) 871-0000Clinic and Education Center

Riley Hospital for Children702 Barnhill Dr.Indianapolis, IN 46202(317) 274-8784Indiana State Department of Health2 North Meridian Street, 7FIndianapolis, IN 26204(888) 815-0006

Sickle Cell Disease Association ofAmerica, Inc.Website: www.sicklecelldisease.org

SickleCell Disease?W

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Currently, about 72,000 people inthe United States have sickle celldisease; each year, about 1,000babies are born with sickle celldisease. Although most people withsickle cell disease are African-Americans, people of other ethnicgroups can also have sickle celldisease.

What is sickle cell disease? Sickle cell disease is part of a groupof conditions called hemoglobinopathies.Hemoglobinopathies are conditions thatoccur when a person has a change in aprotein called hemoglobin. Our bloodcells use hemoglobin to carry oxygen fromour lungs to other parts of the body.When a person has sickle cell disease,his or her blood cells change shape.Instead of the red blood cells being roundand flexible, the red blood cells becomecurved and stiff with a sickle shape likethis: ( . Instead of passing through theblood easily, sickle cells get “stuck” in thebody’s blood vessels. When the sicklecells are stuck, the body’s tissues don’tget enough oxygen.

What causes sickle cell disease? Sickle cell disease is an inherited(passed from parent to child) condition.Everyone inherits two copies of thehemoglobin

gene (one from our mothers and one fromour fathers). When the hemoglobin geneis changed, the gene cannot work properly.People with sickle cell disease have twosickle cell gene changes. People withsickle cell trait have one sickle cell genechange.

What health problems do peoplewith sickle cell disease have? People with sickle cell disease can havehealth problems including pain, infections,and damage to the body’s organs. Whenthe sickle cells get “stuck” in the body, aperson can have an episode or crisis.Symptoms of an episode or crisis mayinclude:

o Shortness of breatho Dizzinesso Headacheo Coldness in the hands and feeto Pale skino Chest paino Swelling

How is sickle cell disease treated? There is no cure for sickle cell disease. Sickle cell disease is a lifelong illness,but it can be treated. Most patients withsickle cell disease will take penicillin tolower the chance that an episode willhappen. Early intervention is important—people with sickle cell disease who starttaking penicillin early in life have fewerepisodes.

Children with sickle cell disease Most babies with sickle cell diseaseusually do not have symptoms until theyare 4 – 6 months old. Parents of childrenwith sickle cell disease should learn howto:

o Recognize the features or symptomsof sickle cell disease.

u One of the first symptoms to berecognized in infants is Hand-Foot Syndrome. This occurswhen a person’s hands and feetdo not receive enough blood.People who have Hand-FootSyndrome may have pain andswelling of the hands and feet.

o Know when to seek immediatemedical care. People who are havingan episode or crisis and need to see adoctor may have some of the followingsymptoms:

u Shortness of breathu Coldness in the hands or feetu Pale skin

Children with sickle cell disease mustbe careful when participating in activitiesthat may make it more difficult to breathe. These activities include playing sports,scuba diving, flying in airplanes, or havingmedical procedures that requireanesthesia. They must also be carefulwhen exercising in hot weather or at highaltitudes (such as in the mountains). It isvery important for people with sickle celldisease to get plenty of oxygen. Nothaving enough oxygen in the body cancause an episode or crisis.