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\nSickle cell disease is a serious health condition that runs in families and can shorten life. In the United States, it affects more people who are black or African-American than other racial or ethnic groups.1\">1 Sickle cell disease, sometimes called sickle cell anemia, causes episodes or crises of intense pain. It can also cause pregnancy problems and other serious health problems throughout life. Treatment can lower the chance of complications and lengthen life.
\nSickle cell disease is a group of red blood cell disorders that are passed down from your parents. This means that it is a genetic disease, and you are born with it.2
\nPeople with sickle cell disease have some red blood cells that are shaped like a \"sickle\" or crescent, instead of round. Normal, round red blood cells are flexible enough to move through blood vessels to carry oxygen to the body. Sickle-shaped red blood cells can stick to each other inside blood vessels, blocking blood flow and causing pain and problems in many different parts of the body. People with sickle cell disease also have fewer red blood cells, because sickle cells die sooner than normal red blood cells. Over time, blocked blood flow and lack of oxygen can cause serious health problems and organ damage.2\">2
\nAll red blood cells have hemoglobin, which makes the cell red and helps carry oxygen to different parts of the body. Red blood cells with normal hemoglobin are round and flexible. If you have sickle cell disease, your red blood cells have abnormal hemoglobin and are crescent- or sickle-shaped.
\nAbnormal hemoglobin genes (sickle cell genes) run in families. Having two sickle cell genes causes sickle cell disease. If you get one sickle cell gene from each of your parents, then you have sickle cell disease. If you get one sickle cell gene and one normal gene from your parents, you have sickle cell trait.
\nRed blood cells that are crescent- or sickle-shaped cannot slide smoothly through small blood vessels like normal, round red blood cells.3\">3 Sickle cells can get stuck in small blood vessels and block blood flow to organs and tissues in the body. When organs do not get enough blood, they do not get enough oxygen. This can cause organ damage and pain. When organs are damaged, they do not work properly. Many of the complications or health problems caused by sickle cell disease are caused by organ damage or inflammation.3,4,5\">3,4,5
\nSickle cells also die sooner than normal red blood cells. Not having enough healthy red blood cells causes anemia, which can make you feel tired or weak because there is less oxygen in your body.
\nThere are different types of sickle cell disease because there are different types of sickle cell genes. You can inherit different types of abnormal hemoglobin genes that cause different types of sickle cell disease. Hemoglobin is what gives red blood cells their red color and is the part of the cell that helps carry oxygen to different parts of the body. In sickle cell disease, the type of disease you have is named after the type of abnormal hemoglobin genes you have. The most common types of sickle cell disease are:
\nPeople who have sickle cell trait have one gene that causes sickle cell disease and one normal gene. Because they have only one sickle cell gene, they do not have the disease. Most people who have sickle cell trait, or just one sickle cell gene, do not have any symptoms of the disease and can live a normal, active life.10,11\">10,11
\nPeople who have sickle cell trait may be at a slightly higher risk of:
\nPeople with sickle cell trait can pass the gene that causes sickle cell disease on to their children. If a mother and a father both have sickle cell trait, there is a 1 in 4 chance that both sickle cell genes will be passed on and their child will have sickle cell disease.2\">2
\nResearchers are not sure how many people are living with sickle cell disease. In the United States, researchers think as many as 100,000 people may have the disease.14\">14
\nSickle cell disease happens more often in people whose families came from Africa, India, the Middle East, and Southeast Asia.15,16\">15,16 In the United States, it is most common among people who are black or African-American. About 1 out of every 365 black or African-American newborns has sickle cell disease. Hispanic-Americans are also at higher risk. Sickle cell disease happens in about 1 out of every 16,300 Hispanic-American newborns.1,17\">1,17
\nResearchers estimate that more than 2 million Americans have sickle cell trait.17\">17
\nSickle cell disease can cause unique problems in women. In addition to the major complications of sickle cell disease, if you are a woman with sickle cell disease, you may also have:
\nSymptoms can be different for each person with sickle cell disease. People who have mild types of sickle cell disease may start having symptoms and complications at older ages than those with severe sickle cell disease.8\">8
\nThe most common symptom is pain caused by sickle cells blocking blood flow in blood vessels. When blood vessels are blocked, organs and tissue do not get oxygen, which causes pain. Having fewer red blood cells than normal causes anemia or not enough oxygen in the blood, making you feel tired and weak. You may also have symptoms of other health problems if the disease causes damage to a part of the body, such as the spleen, heart, lungs, eyes, kidneys, liver, or other organs.
\nYou may have to go to the hospital for treatment you cannot get at home or at a doctor's office. Anyone having a medical emergency should call 911. Everyone with sickle cell disease should make a pain management plan with their doctor. The pain management plan helps you know when to go to the hospital for a pain crisis. You may need to go to the hospital for other health problems caused by sickle cell disease.
\nPeople with sickle cell disease should go to the hospital for:
\nIn the United States, all newborn babies are tested for sickle cell disease.17\">17
\nYour doctor or nurse may do tests to diagnose sickle cell disease if you were not diagnosed as a baby but have symptoms as an adult. These tests may include:
\nIf you are pregnant, you may choose to have a test called amniocentesis to see if your unborn baby has sickle cell disease. The doctor uses a needle to take a small amount of fluid from around the fetus inside your uterus (womb).23\">23 Health risks for the unborn baby during amniocentesis are very rare but can be serious. Talk to your doctor, nurse, or midwife about the risks and benefits of testing.
\nMedicines for sickle cell disease include:
\nSome medical procedures can treat problems caused by sickle cell disease or cure sickle cell disease.
\nBone marrow transplant. A bone marrow transplant, or hematopoietic stem cell transplant (HSCT), is currently the only cure for sickle cell disease. But a bone marrow transplant is not an option for many people with sickle cell disease because there is no matched bone marrow donor available. Also, a bone marrow transplant is a risky medical procedure that can cause serious health problems.
During a bone marrow transplant, a person's bone marrow stem cells are replaced with bone marrow stem cells from a healthy, matched donor. The bone marrow (the tissue inside of bones) makes new red blood cells for the body. The healthy new bone marrow stem cells make healthy red blood cells instead of sickle cells.
Finding a matched donor can be difficult. The bone marrow has to come from a donor who has matching proteins on their cells, usually a brother or sister.28\">28 More than 90% of transplants are successful when the bone marrow comes from a matched brother or sister.29\">29
Severe complications can happen if the cells are not matched. Complications can include severe infections, seizures, or possibly death. Graft-versus-host disease, where the transplanted cells attack the recipient's organs, can happen if the donor is not well-matched. Sometimes these complications happen with a well-matched donor. Having a stem cell transplant may mean that you cannot get pregnant in the future.30\">30
Researchers are looking for ways to make bone marrow transplants safer for more people.
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Complications of sickle cell disease depend on your age, your medical history, and the type of disease you have. Sickle cell disease complications are not always the same in different people and can happen at any time in life. People with mild types of sickle cell disease usually have complications at an older age compared with people who have severe types of the disease.
\nSerious complications include:
\nPain. This includes pain crises, also called acute pain. A pain crisis is sharp and intense pain that comes on suddenly. It is the most common complication in sickle cell disease. Pain crises can happen anywhere in the body and in more than one place. They are often in the back, hands and feet, chest, or abdomen.31\">31
Triggers for acute pain crises include infection, dehydration, asthma, cold temperatures, and sometimes your menstrual period.31\">31 People can also have a pain crisis without a trigger. Pain crises are more common in people 10 to 39 years old, especially women.18
Many people with sickle cell disease also develop chronic (long-term) pain that can last for months or longer.32\">32
Anemia, including acute anemia that comes on suddenly. Anemia is when you have fewer red blood cells than normal. Since red blood cells carry oxygen to the body, anemia can make you feel tired and weak because your body is not getting enough oxygen. Severe anemia can cause shortness of breath, dizziness, and pale skin. A normal red blood cell lives for 120 days. A sickle cell may live as few as 12 days.8\">8 Because the sickle cells die so quickly, people with sickle cell anemia do not always have enough red blood cells.
A common infection called \"slapped cheek syndrome\" or \"fifth disease\" can also cause severe anemia in people with sickle cell disease. The infection stops new blood cells from being made, leading to anemia.33\">33
Some specialists do not recommend combination hormonal birth control (containing a combination of two different hormones) for women with sickle cell disease, because it adds to your higher risk of stroke.
Other complications include:
\nAny activity or situation that limits or decreases blood flow, or lowers the amount of oxygen in your blood, can trigger sickle cell pain. Often, you won't know what triggered a pain crisis. But, there are some known triggers for sickle cell pain.37\">37
\nYou can take steps to manage different kinds of sickle cell disease pain.
\nSevere pain. Severe pain crises may need prescription pain medicine. The standard pain medicines for severe pain are opioids.9\">9 Opioids are powerful pain medicine, but they can have serious risks and side effects. You can take your own prescription pain medicine at home if your doctor prescribed it for you. A doctor who specializes in sickle cell disease can work with you to figure out a schedule for how much prescription pain medicine you should take and how often you should take it. It can be difficult to describe your pain, but the more you can tell doctors and nurses, the more they may be able to help treat your pain.
You might need to go to a hospital if you do not have your own prescription pain medicine or if it does not work during a pain crisis. In the hospital, the doctors and nurses can give you pain medicine and intravenous (IV) fluids to help you feel better.31\">31
No matter what kind of pain you have, sometimes anxiety, depression, and not getting enough sleep can make pain worse. Get help and treatment for any mental health condition or sleep problems. Managing your mental health can help you manage your physical health.31\">31
\nA pain management plan has clear, written instructions for when to take medicine, which medicine to take, what dose to take, and what to do if the pain gets worse. You can work with your doctor or nurse to develop the plan.
\nWith a pain management plan, you might not have to go to the emergency room or hospital as often. If you do go to the hospital, take the plan and your doctor's or nurse's contact information with you.31\">31 Some pain management plans and health information include results from a genetic test showing that you have sickle cell disease and which type it is. This information can also help doctors and nurses in the hospital find the right treatment for you.
\nA pain management plan may also have instructions for managing chronic or long-term pain. Your plan may suggest ways to treat less serious, but ongoing, sickle cell pain with nonmedical treatments such as a heating pad; hot bath; relaxing activities, such as watching TV or reading; or stress management methods.
\nSickle cell disease is a chronic (long-term) disease, but you can live a full and active life by learning how to stay as healthy as possible. Follow these tips to manage your sickle cell disease:41\">41
\nSickle cell disease is different in every person, but women and girls may experience unique complications.
\nOlder women are more likely to have chronic pain but may have fewer pain crises than younger women. Researchers think that older women with sickle cell disease are also more likely to have organ and tissue damage, which causes complications. Sickle cell disease complications that may be more common in older women include:43\">43
\nWomen who often experience acute pain crises, or women with chronic pain, may be more likely to have pain during sex. If you are taking opioids to manage sickle cell disease pain, they may affect hormone levels. Abnormal hormone levels may cause pain during sex.22\">22
\nWomen who have sickle cell disease can use normal birth control methods. Some doctors do not recommend combination hormonal birth control (with a combination of two types of hormones), because it slightly increases the risk of blood clots and stroke in all women. Some women who have sickle cell disease have reported pain crises that happen more often with combination hormonal birth control.44\">44 Birth control methods using only one type of hormone, like progesterone, may lower risk and may help control sickle cell disease pain crises.42\">42,44\">44
\nComplications from sickle cell disease may make it more difficult to get pregnant. Scientists still do not fully understand the effects of sickle cell disease treatments on women's fertility. Some of the common treatments for sickle cell disease and pain medicines may affect fertility:21\">21
\nIf you have sickle cell disease and want to have a child, talk to your doctor or nurse about how to prepare. Your doctor or nurse will give you steps to take before pregnancy to reduce the risk of complications for you or your baby. These may include:19\">19
\nWomen who have sickle cell disease have a higher risk of problems during pregnancy. These include:20\">20,45\">45
\nWomen who have sickle cell disease and become pregnant are at greater risk of experiencing sickle cell disease complications during pregnancy. The risks are higher for those with more severe sickle cell disease. Possible sickle cell complications during pregnancy include:19\">19,20\">20
\nTo reduce the chance of sickle cell\u2013related complications during pregnancy, it is especially important to avoid conditions that can trigger complications.19\">19 Learn how to stay well when you have sickle cell disease.
\nYour baby will be tested for sickle cell disease after birth. If you and the baby's father have sickle cell disease, then the baby will too. If you have sickle cell disease and the baby's father has sickle cell trait, or just one sickle cell gene and one normal gene, then there is a 1 in 2 chance the baby will have sickle cell disease. If both parents have sickle cell trait, there is a 1 in 4 chance the baby will have sickle cell disease.2\">2 If your baby is diagnosed with sickle cell disease, your doctor or nurse will talk to you about what to expect. Learn what symptoms to watch for in your child.
\nWhen you have sickle cell disease and are pregnant, you have a higher risk of health problems and pregnancy problems. While you are pregnant, you may see different doctors, including a hematologist, a doctor who specializes in blood diseases. You may need to see a maternal-fetal medicine specialist who is trained in managing high-risk pregnancies. Your doctor, nurse, or midwife may send you to other specialists, depending on your medical history.20\">20
\nStaying healthy is important for any pregnancy, but if you have sickle cell disease, you will need special care during your pregnancy to help you and your unborn baby stay healthy.
\nAdults with sickle cell disease are more likely to experience chronic or long-term pain and health problems that happen because of organ damage.
\nMoving from pediatric (childhood) to adult medical care is a high-risk period for people with sickle cell disease. This might be because damage from sickle cell disease builds up over time and might not cause health problems until you are an adult. Or, it may be difficult to find a doctor who specializes in sickle cell disease in adults.
\nTeens and young adults should prepare ahead of time for living on their own with sickle cell disease. Some doctors and nurses begin talking about the transition to adult care as young as 13. Discussions between doctors, nurses, social workers, the patient, and family members about the transition should start at least one year before the transition to adult care.48\">48 Healthy eating, regular exercise (not intense exercise), getting enough sleep, and dealing with stress in healthy ways can help prevent sickle cell crises. Find a specialist as soon as possible if you move to a new area. Figure out which hospital or center is closest if you have a medical emergency. Tell friends or loved ones who are nearby about the type of support you might need if you have a sickle cell crisis.
\nResearch and new medicines such as vaccines are helping people with sickle cell disease live decades longer, with fewer health problems, than in the past. Doctors and researchers are working on better ways to treat sickle cell pain and on cures for all people with sickle cell disease.49\">49 Current sickle cell disease research areas include:
\nFor more information about sickle cell disease, call the OWH Helpline at 1-800-994-9662 or contact the following organizations:
\nThis content is provided by the Office on Women's Health.
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