Sickle Cell Disease in Your Child

Sickle Cell Disease in Your Child

Do you have a child who was recently diagnosed with sickle cell disease? If so, it is important for you to understand what sickle cell disease is and how it can affect the health of your child. Sickle cell disease is a disorder of red blood cells. It is the most common inherited blood disorder in the United States and is especially common in people of African or Mediterranean decent.

What happens in sickle cell disease?

Normal red blood cells have a round shape that helps them carry oxygen. In sickle cell disease, the red blood cells take on an abnormal “sickled” shape and can get stuck in blood vessels. When this happens, it can block the flow of blood and prevent oxygen from getting to your tissue. Sickle cells also do not live as long healthy cells, which can cause a shortage of red blood cells in the body.

What are complications of sickle cell disease?

Possible serious complications that can occur in sickle cell disease are:

  1. Chronic anemia which can lead to inadequate delivery of oxygen to tissues.
  2. Osteomyelitis which is a serious and painful infection of the bone.
  3. Acute chest syndrome which may compromise oxygen delivery to the lungs.
  4. Aplastic crisis which can cause severe pain, destruction of blood cells, and irreversible injury to tissues.
  5. Increased risk of infections
  6. Stroke
  7. Chronic kidney failure

Does sickle cell disease go away?

No. Your child will not “outgrow” his sickle cell disease. Serious complications can occur at any point in his life.

What should I do as a parent to stay active in my child’s care?

  • Make regular appointments with a hematologist (doctor who specializes in blood disorders).
  • Know the names of your child’s doctors, nurses, and social workers.
  • Know what type of sickle cell disease your child has.
  • Keep track of your child’s medications. Know what they are and why he or she takes them.
  • If you child gets blood transfusions, keep track of how many.

Where can I find more resources?

    • Become a fan at Be Sickle Smart
    • Call the sickle cell anemia hotline at 1-800-421-8453
    • Mobile applications

o SCD RESOURCE LOCATOR: Help find doctors, support groups, and pharmacies in your area. Available for iPhone and Android
o TREATMENT TRACKER: Helps you keep track of transfusions and serum ferritin levels to stay aware of your child’s risk for iron overload.