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Sickle cell anemia is the most common inherited blood disorder in America. Even so, it's a disease that gets very little attention.
Around 2 million Americans carry the genes that cause the disease, but most do not know they are at risk. That's why a new campaign is trying to increase awareness and testing.
Chad Houston, 12, comes to Children's Hospital in Oakland once a month to get treated for sickle cell anemia.
Normal blood cells are donut shaped and flexible. But with sickle cell they become sickle shaped and stiff, blocking blood vessels and causing intense pain.
Chad Houston/ Sickle Cell Patient: "Sometimes it's like excruciating, it really hurts bad. But sometimes it's dull."
In the 60's and 70's, testing for the sickle cell trait was commonplace. But lately it has fallen, so many couples don't know their children are at risk of the disease.
That's why a new campaign is trying to make people aware of the problem and encourage them to get tested.
Dr. Michael Lenoir/ Sickle Cell Awareness: "Many African Americans don't know their sickle cell status, and even now when we have pushed so hard for early screening for newborn infants, only about 15 % of people who are told their infant has the trait ever go for any subsequent counselling."
Awareness is important because today there are new, more effective therapies and medications.
Bone marrow and cord blood transplants can actually cure the disease in up to 90% of patients who get a perfect match.
Patients like Chad undergo monthly transfusions that literally clean the blood of sickle cells. Dr. Elliott Vichinsky, director of the sickle cell program at Children's Hospital in Oakland, says medications can help reduce the pain and complications of the disease.
Dr. Elliott Vichinsky/ Children's Hospital Oakland: "All in all, these drugs require them to be seen quite regularly, but can reduce the toxicity of the disease quite dramatically."
That's good news for Chad, who is already planning his future.
Chad Houston: "If I don't play baseball, I'd like to be a doctor."
The goal is to get more people tested. As with most things in medicine, awareness is key. We're making progress in medical treatments for the disease, and resources are available to help counsel people who carry the trait.