Sickle Cell Disease

What is Sickle Cell Disease?

In America 90,000 - 100,000 people have sickle cell disease. This disease is an inherited blood disorder that affects the red blood cells. If a child inherits the sickle cell gene from both parents, they will have sickle cell disease. Someone who inherits the gene from just one parent will have the sickle cell trait, but not the disease. They will remain a carrier of the gene. Normal red blood cells are doughnut shaped and are able to move easily through small blood vessels. Sickle cells are pointed and stiff. These cells get stuck in narrow blood vessels. This causes anemia, episodes of pain and can lead to organ damage.

Symptoms in the Classroom

Infection: Kids with sickle cell disease are at increased risk for certain bacterial infections. It's important to watch for fevers of 101F (38C) or higher, which could signal an infection. Children with sickle cell disease and fever should be seen by a doctor immediately. Painful episodes: These may occur in any part of the body and may be brought on by cold or dehydration. The pain may last a few hours, a few days, or sometimes much longer. Pain may be so severe that a child needs to be hospitalized. Stroke: Impaired blood flow in the brain can occur. Signs can include headache, seizures, weakness of the legs and arms, speech problems, a facial droop, or loss of consciousness.

Diagnosis and Testing

Sickle cell disease usually is diagnosed at birth with a blood test during routine newborn screening tests. Children with sickle cell disease are at an increased risk of infection and other health complications, early diagnosis and treatment to prevent problems is important. Currently, more than 40 states require newborn screening programs for sickle cell disease.

As recently as 30 years ago, children with SCD usually did not survive into adulthood. Now, as a result of advances in screening and treatment, more than 90 percent of individuals with SCD reach adulthood. Agency for Healthcare Research

Current Research
Bone marrow transplants are the only known cure for sickle cell. Unfortunately this procedure is expensive, risky and only for severe cases. Even without a cure, children can lead healthy lives with the help of medications. Advances in the field of medication has helped to manage the pain. Also additional advancements with antibiotics has helped to prevent infections. Currently gene research continues to be studied as a way to inactivate the sickle gene. Based on findings in 2013, researcher Stuart Orkin, MD stated, "Coupled with recent advances in technologies for gene engineering in intact cells, it could lead to powerful ways of manipulating hemoglobin production and new treatment options for hemoglobin diseases."

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Family Resources National Headquarters 231 E. Baltimore Street, Suite 800 Baltimore, MD 21202 Office 410.528.1555 Fax 410.528.1495 Toll Free 800.421.8453 scdaa@sicklecelldisease. org American Sickle Cell Anemia Association 10300 Carnegie Avenue Cleveland, Ohio 44106 216-229-8600 http://www.ascaa.org/su pport_groups.asp Johns Hopkins Childrens Center Pediatric Hematology/Oncology Unit 600 North Wolfe Street Baltimore, Maryland 21287 410-955-6132 http://www.hopkinschild rens.org/hematology/ Lauren D. Beck Sickle Cell Support Group Anne Arundel Medical Center Sajack Pavillion 2002 Medical Parkway Annapolis, Maryland 21401 Medical Conference Room 1

Sickle Cell Disease

Teaching Strategies
Provide students the opportunity to make up the missed instruction, assignments, and testing. Children may seem tired or not motivated to learn. Get to know the student, so you can help make a proper assessment. In general, they should be allowed to participate in any activities, but they must be careful to avoid overexertion, dehydration and extremes of temperature. They must learn to stop at the first sign of fatigue. Allow your student to carry a bottle of water and take bathroom breaks. Allow breaks from instruction and activities when necessary. Avoid outdoor activities when it's very hot or very cold. Have a plan in place in case your students experience any symptoms that require immediate medical attention. Classmates may begin to wonder, question and worry about their missing classmate. Educational topics will help to eliminate rumors and offer ideas on how to be a supportive friend.

Classroom Innovations
Children with sickle cell disorder miss a greater number of days of school than average. Some absences may be an extended time, if hospitalization is needed. Make classwork and homework assignments available to the parents to prevent the student from falling behind.

Under the category of other Health and Impairment or under Section 504 or the Rehabilitation Act, a child with sickle cell disease may qualify for Special Education through the Individuals with Disability Education Act (IDEA).

References
Using email and the internet, parents and teachers can keep each other informed. Social interaction is an important part of school, if possible help the child stay connected through programs such as Skype. Use interactive sites to help other students learn more about sickle cell. Some sites are KidsHealth.org or Starlight foundations Sickle Cell SlimeO-Rama
Howard Taras, William Potts-Datema.(2005) Chronic health conditions and students performance at school. Journal of School Health. Sept 2005 v75 i7 p255(12). Dyson M, Abuateye H, Atkin K, Culley L, Dyson E, Rowley D. (2010) Schools fail children with sickle cell disorder. School Health Journal. April 2010 v6 il p16 Sickle cell anemia; studies from S. mayes and coresearchers yield new data on sickle cell anemia. (2011). Education Letter, , 234. Retrieved from http://ezproxy.aacc.edu/ American Academy of Family Physicians. (2000). Sickle Cell in Childhood. Retrieved from http://www.aafp.org/ Center for Disease Control. (2011) Sickle Cell Fact Sheet. Retrieved from http://www.cdc.gov/ncbddd/sicklecell/ Kids Health. (2013). Fact Sheet for Teachers. Retrieved from http://kidshealth.org/