Sickle cell disease is a blood disorder that predominantly affects the African-American community, although it is also common in people with a Hispanic background. The disease is inherited when both parents carry sickle cell trait. An abnormal protein causes the red blood cells to change shape, making them look like a sickle, or a crescent.
According to the National Institutes of Health, 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. Over a lifetime, sickle cell disease can harm a patient’s spleen, brain, eyes, lungs, liver, heart, kidneys, penis, joints, bones or skin.
The disease is serious and life-long, but most people with sickle cell disease can lead long and active lives. For the best outcome, it’s important to get diagnosed and follow a treatment plan.
Every year more than 2,000 babies are diagnosed with sickle cell disease. Babies born in California are routinely screened for sickle cell so that treatment plans can start early. Symptoms vary from person to person. Thanks to advances in treatment, serious problems of the disease are less and less common. Some people are still at risk for chronic pain and other severe complications. Good medical care and regular visits to your doctor can make a big difference.
When a child is diagnosed with sickle cell, a doctor will develop a treatment plan in cooperation with the family. Treatment usually includes regular doses of antibiotics to prevent infection, folic acid to encourage new blood cell formation, and other simple treatments that can help manage or prevent any concerns or complications that come up.
At Kaiser Permanente, we take a holistic approach to sickle cell disease, meeting regularly with the entire family to create and update treatment plans. We have doctors and nurses who specialize in treating children with sickle cell disease. We have experts in managing this disease and a experienced support staff for all the additional needs of the patients and their families.
Living well with sickle cell disease involves more than medication. Keeping hydrated, eating healthily, and being regularly screened for other diseases is a key part of managing the disease. There’s also an emotional component – for children, it can be hard to live with a disease that their friends do not have. Support from parents and family is important. Kaiser Permanente and other providers offer support groups, information about policies like the Family and Medical Leave Act and other resources so that children’s support networks can be strong.
In the past, people will sickle cell disease often faced severe complications. Today, we are getting better and better at managing the disease, and some things you may have heard previously are no longer true. New treatments like bone-marrow transplants and gene therapy are showing promising results in treating and even curing sickle cell disease. However, these are not yet part of routine treatments. With good medical care, sickle cell disease can be controlled and managed, allowing one to thrive.