Toolkit for Living Well with Sickle Cell Disease

Sickle cell disease (SCD) is a genetic condition that affects the body’s red blood cells. Early signs and symptoms of sickle cell disease include swelling of the hands and feet; symptoms of anemia, including fatigue, or extreme tiredness; and jaundice. Over time, sickle cell disease can lead to complications such as infections, delayed growth, and episodes of pain, called pain crises. Most children who have sickle cell disease are pain-free between crises, but adolescents and adults may also suffer with chronic, ongoing pain.

A blood and bone marrow transplant is currently the only cure for sickle cell disease, and only a small number of people who have sickle disease are able to have the transplant. There are effective treatments that can reduce symptoms and prolong life. Early diagnosis and regular medical care to prevent complications also contribute to improved well-being. Sickle cell disease is a life-long illness. The severity of the disease varies widely from person to person.

The disease impacts nearly 100,000 people in the U.S. While the disease is most common among African Americans, Latinos and people of Middle Eastern, Indian, Asian and Mediterranean backgrounds are affected.

The document Living Well with Sickle Cell Disease Self-Care Toolkit is a brief but comprehensive guide for people living with the disease and their caregivers. It provides helpful information about the disease and managing it, along with forms designed to track appointments, medical treatment, and symptoms.

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Date: 2018