Sickle Cell Anemia

Sickle cell anemia (uh-NEE-me-uh) is a serious disease in which the body makes sickle-shaped red blood cells. “Sickle-shaped” means that the red blood cells are shaped like a "C."

Normal red blood cells are disc-shaped and look like doughnuts without holes in the center. They move easily through your blood vessels. Red blood cells contain the protein hemoglobin (HEE-muh-glow-bin). This iron-rich protein gives blood its red color and carries oxygen from the lungs to the rest of the body.

Sickle cells contain abnormal hemoglobin that causes the cells to have a sickle shape. Sickle-shaped cells don’t move easily through your blood vessels. They’re stiff and sticky and tend to form clumps and get stuck in the blood vessels. (Other cells also may play a role in this clumping process.)

The clumps of sickle cells block blood flow in the blood vessels that lead to the limbs and organs. Blocked blood vessels can cause pain, serious infections, and organ damage.

Normal and Sickled Red Blood Cells

 

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Figure A shows normal red blood cells flowing freely in a blood vessel. The inset image shows a cross-section of a normal red blood cell with normal hemoglobin. Figure B shows abnormal, sickled red blood cells clumping and blocking blood flow in a blood vessel. (Other cells also may play a role in this clumping process.) The inset image shows a cross-section of a sickle cell with abnormal hemoglobin.

Overview

Sickle cell anemia is one type of anemia. Anemia is a condition in which your blood has a lower than normal number of red blood cells. This condition also can occur if your red blood cells don’t have enough hemoglobin.

Red blood cells are made in the spongy marrow inside the large bones of the body. Bone marrow is always making new red blood cells to replace old ones. Normal red blood cells last about 120 days in the bloodstream and then die. They carry oxygen and remove carbon dioxide (a waste product) from your body.

In sickle cell anemia, a lower-than-normal number of red blood cells occurs because sickle cells don’t last very long. Sickle cells usually die after only about 10 to 20 days. The bone marrow can’t make new red blood cells fast enough to replace the dying ones.

Sickle cell anemia is an inherited, lifelong disease. People who have the disease are born with it. They inherit two copies of the sickle cell gene—one from each parent.

People who inherit a sickle cell gene from one parent and a normal gene from the other parent have a condition called sickle cell trait. Sickle cell trait is different from sickle cell anemia. People who have sickle cell trait don’t have the disease, but they have one of the genes that cause it. Like people who have sickle cell anemia, people who have sickle cell trait can pass the gene to their children.

Outlook

Sickle cell anemia affects millions of people worldwide. The disease has no widely available cure. However, there are treatments for the symptoms and complications of the disease. Bone marrow transplants may offer a cure in a small number of cases.

Over the past 30 years, doctors have learned a great deal about sickle cell anemia. They know its causes, how it affects the body, and how to treat many of its complications.

Sickle cell anemia varies from person to person. Some people who have the disease have chronic (long-term) pain or fatigue (tiredness). However, with proper care and treatment, many people who have the disease can have improved quality of life and reasonable health much of the time.

Due to improved treatment and care, people who have sickle cell anemia are now living into their forties or fifties, or longer.

What Causes Sickle Cell Anemia?

Sickle cell anemia is an inherited disease. People who have the disease inherit two copies of the sickle cell gene—one from each parent.

The sickle cell gene causes the body to make abnormal hemoglobin. Hemoglobin is the iron-rich protein that gives blood its red color and carries oxygen from the lungs to the rest of the body.

In sickle cell anemia, the hemoglobin sticks together when it delivers oxygen to the body’s tissues. These clumps of hemoglobin are like liquid fibers. They cause the red blood cells to become stiff and shaped like a sickle, or “C.” The sickled red blood cells tend to stick together and get caught in the blood vessels. (Other cells also may play a role in this process.)

Two copies of the sickle cell gene are needed for the body to make the abnormal hemoglobin found in sickle cell anemia.

Sickle Cell Trait

If you inherit only one copy of the sickle cell gene (from one parent), you will not have sickle cell anemia. Instead, you will have sickle cell trait.

People who have sickle cell trait usually have no symptoms and lead normal lives. However, they can pass the sickle cell gene to their children.

The following image shows how two parents who have sickle cell trait can pass the sickle cell gene to their children.

Example of an Inheritance Pattern for Sickle Cell Trait

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The image shows how sickle cell genes are inherited. A person inherits two copies of the hemoglobin gene—one from each parent. A normal gene will make normal hemoglobin (A). An abnormal (sickle cell) gene will make abnormal hemoglobin (S).

When each parent has a normal gene and an abnormal gene, each child has: a 25 percent chance of inheriting two normal genes; a 50 percent chance of inheriting one normal gene and one abnormal gene; and a 25 percent chance of inheriting two abnormal genes.

Who Is At Risk for Sickle Cell Anemia?

Sickle cell anemia affects millions of people worldwide. It's most common in people whose families come from Africa, South or Central America (especially Panama), Caribbean islands, Mediterranean countries (such as Turkey, Greece, and Italy), India, and Saudi Arabia.

In the United States, sickle cell anemia affects about 70,000 people. It mainly affects African Americans. The disease occurs in about 1 out of every 500 African American births. Sickle cell anemia also affects Hispanic Americans. The disease occurs in 1 out of every 36,000 Hispanic American births.

About 2 million Americans have sickle cell trait. The condition occurs in about 1 in 12 African Americans.

What Are the Signs and Symptoms of Sickle Cell Anemia?

The signs and symptoms of sickle cell anemia vary. Some people have mild symptoms. Others have very severe symptoms and often are hospitalized for treatment.

Sickle cell anemia is present at birth, but many infants don't show any signs until after 4 months of age.

The most common signs and symptoms are linked to anemia and pain. Other signs and symptoms are linked to the disease's complications.

Signs and Symptoms Related to Anemia

The most common symptom of anemia is fatigue (feeling tired or weak). Other signs and symptoms of anemia include:

  • Shortness of breath
  • Dizziness
  • Headache
  • Coldness in the hands and feet
  • Pale skin
  • Chest pain

Signs and Symptoms Related to Pain

Sudden pain throughout the body is a common symptom of sickle cell anemia. This pain is called a "sickle cell crisis." Sickle cell crises often affect the bones, lungs, abdomen, and joints.

A sickle cell crisis occurs when sickled red blood cells form clumps in the bloodstream. (Other cells also may play a role in this clumping process.) These clumps of cells block blood flow through the small blood vessels in the limbs and organs. This can cause pain and organ damage.

The pain from sickle cell crises can be acute or chronic, but acute pain is more common. Acute pain is sudden and can range from mild to very severe. The pain usually lasts from hours to a few days. Chronic pain often lasts for weeks to months. Chronic pain can be hard to bear and mentally draining. This pain may severely limit your daily activities.

Almost all people who have sickle cell anemia have painful crises at some point in their lives. Some have these crises less than once a year. Others may have 15 or more crises in a year.

Many factors can play a role in a sickle cell crisis. Often, more than one factor is involved and the exact cause isn't known. You can control some factors. For example, your risk for a sickle cell crisis increases if you're dehydrated (your body doesn't have enough fluid). Drinking plenty of fluids can lower your risk for a painful crisis. Other factors, such as an infection, you can't control.

Painful crises are the leading cause of emergency room visits and hospitalizations of people who have sickle cell anemia.

Complications of Sickle Cell Anemia

The effects of sickle cell crises on different parts of the body can cause a number of complications.

Hand-Foot Syndrome

Sickle cells can block the small blood vessels in the hands or feet. This condition is called hand-foot syndrome. It can lead to pain, swelling, and fever. One or both hands and/or feet may be affected at the same time.

You may feel the pain in the many bones of the hands and feet. Swelling often occurs on the back of the hands and feet and moves into the fingers and toes. Hand-foot syndrome may be the first sign of sickle cell anemia in infants.

Splenic Crisis

The spleen is an organ in the abdomen. Normally, it filters out abnormal red blood cells and helps fight infection. In some cases, the spleen may trap cells that should be in the bloodstream. This causes the spleen to grow large and leads to anemia.

If the spleen gets too clogged with sickle cells, it won't work right. This can cause the spleen to shrink. If this happens, you may need blood transfusions until your body can make more cells and recover.

Infections

Both children and adults who have sickle cell anemia have a hard time fighting infections. This is because sickle cell anemia can damage the spleen, an organ that helps fight infections.

Infants and young children who have damaged spleens are more likely to get infections that can kill them within hours or days. Pneumonia is the most common cause of death in young children who have sickle cell anemia.

Meningitis, influenza, and hepatitis are other infections that are common in people who have sickle cell anemia.

Acute Chest Syndrome

Acute chest syndrome is a life-threatening condition linked to sickle cell anemia. It's similar to pneumonia. The condition is caused by an infection or sickle cells trapped in the lungs.

People who have this condition usually have chest pain and fever. They also often have abnormal chest x ray results. Over time, lung damage from acute chest syndrome may lead to pulmonary arterial hypertension (PAH).

Pulmonary Arterial Hypertension

Damage to the small blood vessels in the lungs makes it hard for the heart to pump blood through the lungs. This causes blood pressure in the lungs to rise.

Increased blood pressure in the lungs is called pulmonary arterial hypertension, or PAH. Shortness of breath and problems with breathing are the main symptoms of PAH.

Delayed Growth and Puberty in Children

Children who have sickle cell anemia often grow more slowly than other children. They also reach puberty later. A shortage of red blood cells causes the slow growth rate. Adults who have sickle cell anemia often are slender or smaller in size than other adults.

Stroke

Two forms of stroke can occur in people who have sickle cell anemia. One form occurs when a blood vessel in the brain is blocked. The other form occurs when a blood vessel in the brain bursts.

A stroke can cause learning disabilities and/or lasting brain damage, long-term disability, paralysis (an inability to move), or death.

Eye Problems

Sickle cells also can clog the small blood vessels that deliver oxygen-rich blood to your eyes. This can damage the retinas-thin layers of tissue at the back of your eyes. The retinas take the images you see and send them to your brain.

Without enough blood, the retinas will weaken. This can cause serious problems, including blindness.

Priapism

Males who have sickle cell anemia may have painful and unwanted erections. This condition is called priapism (PRI-a-pizm). It happens because the sickle cells block blood flow out of an erect penis. Over time, priapism can damage the penis and lead to impotence.

Gallstones

When red blood cells die, they release their hemoglobin. The body breaks down this protein into a compound called bilirubin. Too much bilirubin in the body can cause stones to form in the gallbladder.

Gallstones may cause steady pain that lasts for 30 minutes or more in the upper right side of the belly, under the right shoulder, or between the shoulder blades. The pain may happen after eating fatty meals.

People who have gallstones may have nausea (feeling sick to the stomach), vomiting, fever, sweating, chills, clay-colored stools, or jaundice (a yellowish color of the skin or whites of the eyes).

Ulcers on the Legs

Sickle cell ulcers (sores) usually begin as small, raised, crusted sores on the lower third of the leg. Leg sores occur more often in males than in females. These sores usually appear between the ages of 10 and 50.

The cause of sickle cell ulcers isn't clear. The number of ulcers can vary from one to many. Some heal quickly, but others persist for years or come back after healing.

Multiple Organ Failure

Multiple organ failure is rare, but serious. It happens if you have a sickle cell crisis that causes two out of three major organs (lungs, liver, or kidney) to fail.

Symptoms of this complication are a fever and changes in mental status, such as sudden tiredness and loss of interest in your surroundings.

How Is Sickle Cell Anemia Diagnosed?

Early diagnosis of sickle cell anemia is very important. Children who have the disease need prompt and proper treatment.

In the United States, all States mandate testing for sickle cell anemia as part of their newborn screening program.

The test uses blood from the same blood samples used for other routine newborn screening tests. It can show whether a newborn infant has sickle cell anemia or sickle cell trait.

Test results are sent to your baby's primary care doctor. This is the doctor who you name on the papers you fill out at the hospital before giving birth. It's important to provide correct contact information to the hospital. This allows your baby's doctor to get the test results as quickly as possible.

If the test shows some sickle hemoglobin, a second blood test is done to confirm the diagnosis. The second test should be done as soon as possible and within the first month of life. If your baby needs a second test, the primary care doctor may send you to a hematologist. This is a doctor who specializes in blood diseases and disorders.

It's also possible for doctors to diagnose sickle cell anemia before birth. This is done using a sample of amniotic fluid or tissue taken from the placenta. (Amniotic fluid is the fluid in the sac surrounding a growing embryo. The placenta is the organ that attaches the umbilical cord to the mother's womb.)

This test can be done as early as the first few months of pregnancy. It looks for the sickle cell gene, rather than the hemoglobin that the gene makes.

How Is Sickle Cell Anemia Treated?

Sickle cell anemia has no widely available cure. However, treatments can help relieve symptoms and treat complications. The goals of treating sickle cell anemia are to relieve pain; prevent infections, eye damage, and strokes; and control complications (if they occur).

Bone marrow transplants may offer a cure in a small number of sickle cell anemia cases. Researchers continue to look for new treatments for the disease. These include gene therapy and improved bone marrow transplants.

Specialists Involved

People who have sickle cell anemia need regular medical care. Some doctors and clinics specialize in treating people who have the disease. Hematologists and pediatric hematologists specialize in treating adults and children who have blood diseases and disorders.

Treating Pain

Medicines and Fluids

Mild pain often is treated with over-the-counter medicine and heating pads. Severe pain may need to be treated in a hospital.

The usual treatments for acute (short-term) pain crises are fluids and pain-killing medicines. Fluids help prevent dehydration, a condition in which your body doesn't have enough fluids. Fluids are given either by mouth or through a vein.

Common medicines used to treat pain crises include acetaminophen, nonsteroidal anti-inflammatory drugs (NSAIDs), and narcotics such as meperidine, morphine, oxycodone, and others. (Narcotic abuse and addiction are issues that must be considered in any pain control plan.)

Treatment for mild-to-moderate pain usually begins with NSAIDs or acetaminophen. If pain continues, a narcotic may be added. Moderate-to-severe pain is often treated with narcotics. The narcotic may be used alone or with NSAIDs or acetaminophen.

Hydroxyurea

If you have severe sickle cell anemia, you may need a medicine called hydroxyurea. This medicine helps reduce the number of painful crises you have. Hydroxyurea is used to prevent painful crises, not to treat them when they occur.

Given daily, this medicine reduces how often painful crises and acute chest syndrome occur. People taking the medicine also need fewer blood transfusions and have fewer hospital visits.

Early studies of hydroxyurea in children show that they have improved growth. These studies also suggest that this medicine may help preserve organ function.

Hydroxyurea can cause serious side effects, including an increased risk for dangerous infections. People who take hydroxyurea must be carefully watched. Your doctor may need to adjust the dose of this medicine to reduce the risk for side effects.

Doctors are studying the long-term effects of hydroxyurea on people who have sickle cell anemia. Studies are under way to find out whether hydroxurea prevents organ damage or other sickle cell complications.

Talk to your doctor about the risks and benefits of taking hydroxyurea.

Preventing Complications

Blood transfusions are commonly used to treat worsening anemia and sickle cell complications. A sudden worsening of anemia due to an infection or enlargement of the spleen is a common reason for a blood transfusion.

Some, but not all, people who have sickle cell anemia need blood transfusions to prevent life-threatening problems such as stroke or pneumonia.

Having routine blood transfusions can cause side effects. Patients must be carefully watched. Side effects can include a dangerous buildup of iron in the blood (which must be treated) and an increased risk of infection from the transfused blood.

For more information, see the Diseases and Conditions Index Blood Transfusion article.

Infections

Infections are a major complication of sickle cell anemia. In fact, pneumonia is the leading cause of death in children who have sickle cell anemia. Other common infections linked to sickle cell anemia include meningitis, influenza, and hepatitis.

If a child who has sickle cell anemia shows early signs of an infection, such as fever, seek treatment right away.

To prevent infections in babies and young children, treatments include:

  • Daily doses of penicillin. Treatment may begin as early as 2 months of age and continue until the child is at least 5 years old.
  • All routine vaccinations (such as a yearly flu shot) plus the meningococcal vaccine.

Adults who have sickle cell anemia also should have flu shots every year and get vaccinated for pneumonia.

Eye Damage

Sickle cell anemia can damage the blood vessels in the eyes. Parents should ask their child's doctor about regular checkups with an eye doctor who specializes in diseases of the retina. The retina is a thin layer of tissue inside the back of the eye.

Adults who have sickle cell anemia also should have regular checkups with an eye doctor.

Strokes

Stroke prevention and treatment is now possible for children and adults who have sickle cell anemia. Starting at age 2, children who have sickle cell anemia often get routine ultrasound scans of their heads. This is called transcranial Doppler ultrasound. These scans are used to check blood flow in the brain.

The scans allow doctors to find out which children are at high risk for a stroke. These children are then treated with routine blood transfusions. This treatment has been found to greatly reduce the number of strokes in children.

Treating Other Complications

Acute chest syndrome is a severe and life-threatening complication of sickle cell anemia. Treatment usually requires hospitalization and may include oxygen, blood transfusions, antibiotics, pain medicine, and checking the body's fluids.

If you have leg ulcers due to sickle cell anemia, you may be given strong pain medicines. Ulcers can be treated with cleansing solutions and medicated creams or ointments. Skin grafts may be needed if the condition continues. Bed rest and keeping the legs raised to reduce swelling are helpful, although not always possible.

Gallbladder surgery may be needed if the presence of gallstones leads to gallbladder disease.

Priapism (a painful erection in males) can be treated with fluids or surgery.

Regular Health Care for Children

Children who have sickle cell anemia need regular health care (just like children who don't have the disease). They need to have their growth checked. They also need to get the routine shots that all children get.

All children younger than 2 need to see the doctor often. Children who have sickle cell anemia may need additional checkups. After age 2, children who have sickle cell anemia may need to see the doctor less often, but usually at least every 6 months.

These visits are a time for parents to talk with their child's doctor and ask questions about the child's care. Talk with your child's doctor about eye checkups and whether your child needs an ultrasound scan of the brain.

Until age 5, daily penicillin is given to most children who have sickle cell anemia. Doctors also give many children a vitamin called folic acid (folate) to help prevent some sickle cell complications.

New Treatments

Research on bone marrow transplants, gene therapy, and new medicines for sickle cell anemia is ongoing. The hope is that these studies will provide better treatments for sickle cell anemia. Researchers also are looking for a way to predict the severity of the disease.

Bone Marrow Transplant

A bone marrow transplant can work well for treating sickle cell anemia. This treatment may even offer a cure in a small number of cases.

However, the procedure is risky and can lead to serious side effects or even death. Because of this, only some people can or should have this procedure.

Bone marrow transplants usually are used only for young patients who have severe sickle cell anemia. However, the decision to give this treatment is made on a case-by-case basis.

Bone marrow used for a transplant must come from a closely matched donor. This is usually a close family member who doesn't have sickle cell anemia.

Researchers continue to look for ways to reduce the risks of this procedure.

Gene Therapy

Gene therapy is being studied as a possible treatment for sickle cell anemia. Researchers want to know whether a normal gene can be put in the bone marrow of a person who has sickle cell anemia. This would cause the body to make normal red blood cells.

Researchers also are studying whether they can "turn off" the sickle cell gene or "turn on" a gene that makes red blood cells behave normally.

New Medicines

Researchers are studying several new medicines for sickle cell anemia. These include:

  • Butyric acid. This is a food additive that may increase normal hemoglobin in the blood.
  • Nitric oxide. This medicine may make sickle cells less sticky and keep blood vessels open. People who have sickle cell anemia have low levels of nitric oxide in their blood.
  • Decitadine. This medicine increases hemoglobin F levels (this type of hemoglobin carries more oxygen). It may be a good choice instead of hydroxyurea.

How Can Sickle Cell Anemia Be Prevented?

You can't prevent sickle cell anemia because it's an inherited disease. However, you can take steps to reduce its complications. (For more information, see "Living With Sickle Cell Anemia.")

People who are at high risk for sickle cell anemia and are planning to have children may want to consider genetic counseling. A counselor can help you understand your risk of having a child who has the disease and help explain the choices that are available to you.

You can get information about genetic counseling from health departments, neighborhood health centers, medical centers, and clinics that care for people who have sickle cell anemia.

Living With Sickle Cell Anemia

With good health care, many people who have sickle cell anemia can live productive lives. They also can have reasonably good health much of the time and live longer today than in the past. Many people who have sickle cell anemia now live into their forties or fifties, or longer.

If you have sickle cell anemia, it's important to:

  • Adopt or maintain a healthy lifestyle
  • Take steps to prevent and control complications
  • Learn ways to cope with pain

If you have a child or teen who has sickle cell anemia, you can take steps to learn about the disease and help your child manage it.

Adopt or Maintain a Healthy Lifestyle

To take care of your health, you should adopt or maintain healthy lifestyle habits.

Follow a healthy eating plan. Your doctor may suggest that you take folic acid (a vitamin) every day to help your body make new red blood cells. You also should drink at least 8 glasses of water every day, especially in warm weather. This will help prevent dehydration (a condition in which your body doesn't have enough fluids).

Your body needs regular physical activity to stay healthy. However, you should avoid exercise that makes you very tired. Drink lots of fluids when you exercise. Talk with your doctor about how much and what kinds of physical activity are right for you.

You also should get enough sleep and rest. Tell your doctor if you think you may have a sleep problem, such as snoring or sleep apnea. Sleep apnea is a common disorder in which you have one or more pauses in breathing or shallow breaths while you sleep.

Talk to your doctor about whether you can drink alcohol and what amount is safe for you. If you smoke, quit. Talk to your doctor about programs and products that can help you quit smoking.

Take Steps To Prevent and Control Complications

Along with healthy lifestyle habits, you can take other steps to prevent and control painful sickle cell crises. A number of factors can cause sickle cell crises. Knowing how to avoid or control these factors can help you manage your pain.

You may want to avoid decongestants, such as pseudoephedrine. These medicines can tighten blood vessels and further prevent red blood cells from moving smoothly through the vessels.

Avoid extremes of heat and cold. Wear warm clothes outside in cold weather and inside of air-conditioned rooms. Don't swim in cold water or climb at high altitudes without extra oxygen.

Reduce the stress in your life. Talk to your doctor if you're depressed or having problems on the job or with your family. Support from family and friends as well as a support group can help you cope with daily life.

If possible, avoid jobs that require a lot of physical labor, expose you to extremes of heat and cold, or involve long work hours.

Also, don't travel in airplanes where the cabins aren't pressurized (that is, no extra oxygen is pumped into the cabin). If you must travel in such an airplane, talk to your doctor about how to protect yourself.

Get a flu shot and other vaccines to prevent infections. You also should see your dentist regularly to prevent infections and loss of teeth. Contact your doctor if you have any signs of an infection, such as a fever or trouble breathing. Getting treatment right away is important.

Regular medical checkups and treatment are also important. Checkups may include tests for possible kidney, lung, and liver diseases. See a sickle cell anemia expert regularly. Also, see an eye doctor regularly to check for damage to your eyes.

Learn the signs and symptoms of a stroke. They include a lasting headache, weakness on one side of the body, limping, and sudden changes in speech, vision, or hearing. If you have any of these symptoms, report them to your doctor promptly.

Get treatment and control any other medical conditions you have, such as diabetes.

Talk to your doctor if you're pregnant or planning to become pregnant. You will need special prenatal care. Sickle cell anemia can worsen during pregnancy.

Women who have sickle cell anemia also are at an increased risk for an early birth or a low-birth-weight baby. However, with early prenatal care and frequent checkups, you can have a healthy pregnancy.

Learn Ways To Cope With Pain

Pain is different for each person. Pain that one person can live with is too much for another person. Work with your doctor to find ways to manage your pain. You may need both over-the-counter and prescription medicines. Your doctor may prescribe narcotic pain medicines. If so, ask him or her how to safely use these medicines.

Other ways to manage pain include using a heating pad, taking a hot bath, resting, or getting a massage. Physical therapy might help ease your pain by helping you relax and strengthening your muscles and joints.

Counseling or self-hypnosis also may help. You may find that activities that keep your mind off the pain, such as watching TV and talking on the phone, are helpful.

Caring for a Child Who Has Sickle Cell Anemia

If your child has sickle cell anemia, you should learn as much about the disease as possible. This will help you recognize early signs of problems, such as fever or chest pain, and seek early treatment.

Sickle cell centers and clinics can give you information and counseling to help you handle the stress of coping with your child's disease.

Ongoing Care

Your child will need to see the doctor often for blood tests. The doctor also will check your child for any possible damage to his or her lungs, kidneys, and liver.

Talk to the doctor about your child's treatment plan, how often he or she needs checkups, and the best ways to help keep your child as healthy as possible.

Preventing Infections

To prevent infections, make sure your child gets all of the vaccines that his or her doctor recommends. (For more information on vaccines, see "How Is Sickle Cell Anemia Treated?")

Good hygiene also can help prevent infections. Make sure your child washes his or her hands often. This will help lower the chances of getting an infection.

Call the doctor right away if your child has any signs of infection, such as fever or trouble breathing. Keep a thermometer on hand and know how to use it. Call a doctor if your child has a temperature above 101 degrees Fahrenheit (38.5 degrees Celsius).

Preventing a Stroke

Know the signs and symptoms of a stroke so you can take action. Signs and symptoms include a lasting headache, weakness on one side of the body, limping, and sudden changes in speech, vision, or hearing. Changes in behavior also may be a sign of a stroke.

Talk with the doctor about whether your child needs regular ultrasound scans of the head. These scans can show whether your child is at high risk for a stroke.

Calling the Doctor

Ask your child's doctor about when you should call him or her right away. For example, he or she may want you to call right away if your child has any signs of a stroke or infection. You also may need to call if your child has:

  • Swelling of the hands or feet.
  • Swelling of the stomach. If the spleen gets larger than normal, you may see or feel swelling below the lower left rib. Your child may complain that the area feels tender.
  • Pale skin or nail beds or a yellowish color on the skin or on the whites of the eyes.
  • Sudden fatigue (tiredness) with no interest in his or her surroundings.
  • An erection of the penis that won't go away.
  • Pain in the joints, stomach, chest, or muscles.
  • A fever.

School-aged children can often, but not always, take part in physical education or sports. However, your child's doctor should approve any activity. Ask the doctor about safe activities for your child.

Caring for a Teen Who Has Sickle Cell Anemia

Teens who have sickle cell anemia must manage their condition, while also dealing with the stresses of the teen years. These teens also face some specific stresses related to sickle cell anemia, including:

  • Body-image problems caused by delayed sexual maturity.
  • Coping with pain and fear of addiction from using narcotic pain medicines.
  • Living with uncertainty. (Sickle cell anemia is unpredictable and can cause pain and damage to the body at any time.)

Teen support groups and family and individual counseling are ways to support teens who have sickle cell anemia.

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