What Is Sickle Cell?

Sickle cell disease is an inherited genetic disorder that affects hemoglobin in red blood cells. Hemoglobin is a protein that carries oxygen to all parts of the body. With sickle cell disease, red blood cells assume a sickle shape which causes the cells to clog in the vessels. This can lead to severe pain and tissue damage.

This disease is debilitating and patients die on average in their 40s.  Health care for people with SCD  is barely adequate and that is another one of our many challenges.

 

Sickle cell disease affects millions of people throughout the world and is particularly common among those whose ancestor s came from sub-Saharan Africa; Spanish speaking regions in the Western Hemisphere  (South America, the Caribbean, and Central America); Saudi Arabia; India; and Mediterranean countries such as Turkey, Greece and Italy.   Americans live with sickle cell disease—a serious disease that causes sever pain, organ damage, strokes and life threatening infections—struggle to get the health care, social services and treatments they need to manage their condition.

People with SCD have less access to comprehensive team care than people with genetic disorders such as hemophilia and cystic fibrosis.  There is uneven availability and utilization of multidisciplinary specialty clinics for different genetic diseases   For two disorders (ie hemophilia and cystic fibrosis), effective national networks of specialty clinics exist and reach large proportions of the taraget populations.  For other disorders, notably sickle cell disease, fewer such centers are available.  Models of joint management are essential to promote ongoing communications and coordination between patient and the healthcare provider particularly during the transition from pediatric care to adult care.  

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