Learn what a typical Sickle cell disease prognosis is at Consumer Reports Health.

Sickle cell disease

What will happen to me?

Lots of people live with sickle cell disease and don't get many painful attacks. However, it is possible to get severe pain and a lot of complications. But treatments are getting better all the time.

There are some serious health problems that can affect children and adults with sickle cell disease. If you or your child has the disease, it may be upsetting to read about these problems. But remember that each individual is affected differently. You or your child may go for years without having any problems.

Lots of people live with sickle cell disease and don't get many painful attacks.

Here are some of the health problems that sickle cell disease can cause. We've tried to say how common these problems are, but the research doesn't always tell us.

Severe infections: Some people get

infection
You get an infection when viruses, bacteria, fungi or other tiny organisms get into your body. These bugs are so tiny that you can't see them without a microscope. For example, an infection in your airways causes the common cold. And an infection in your skin can cause rashes such as athlete's foot.

infections caused by

bacteria
Bacteria are tiny organisms. There are lots of different types. Some are harmful and can cause disease. But some bacteria live in your body without causing any harm.

bacteria. Severe infections such as

pneumonia
Pneumonia is an infection in your lungs. Anything that causes infections (bacteria, viruses or fungi, for example) can give you pneumonia.

pneumonia,

meningitis
If you have a swelling in the thin layers of tissue that surround your brain and your spinal cord, it's called meningitis. It's most often caused by an infection with certain kinds of bacteria or viruses. Meningitis can give you a severe headache and a stiff neck. And you may find it difficult to keep your eyes open in the light. Meningitis is a life-threatening disease. If you have these symptoms, you should get to a hospital right away.

meningitis and

septic shock
Septic shock is a serious condition caused by a large number of bacteria getting into your blood. It's also called septicaemia, sepsis or blood poisoning. Usually, when bacteria get into your blood, your immune system kills them. But if your immune system isn't working well, it can get overwhelmed. Then, the bacteria multiply and start to release poisonous chemicals (called toxins) into your blood. These chemicals cause your blood pressure to drop massively. When this happens, organs such as your brain, heart, kidneys and liver may not be able to work properly because they aren't getting enough blood. Septic shock needs to be treated urgently, usually with antibiotics, to stop these vital organs failing and to prevent death.

septicemia are common, especially among young children.

Source:
Overturf GD, Powars D, Baraff LJ.
Bacterial meningitis and septicemia in sickle cell disease.
American Journal of Disease in Childhood. 1977; 131: 784-787.

¹ It used to be that about a third of children with sickle cell disease got an infection before they were 3 years old.

Source:
Gaston MH, Verter JI, Woods G, et al.
Prophylaxis with oral penicillin in children with sickle cell anemia: a randomized trial.
New England Journal of Medicine. 1986; 314: 1593-1599.

² But this number is much lower today as many children are now treated with

antibiotics
These medications are used to help your immune system fight infection. There are a number of different types of antibiotics that work in different ways to get rid of bacteria, parasites and other infectious agents. Antibiotics do not work against viruses.

antibiotics. (See Treatments to prevent complications of sickle cell disease.)
A stroke: A

stroke
You have a stroke when the blood supply to a part of your brain is cut off. This damages your brain and can cause symptoms like weakness or numbness on one side of your body. You may also find it hard to speak if you've had a stroke.

stroke can happen when a blood vessel in your brain becomes blocked. About 1 in 10 children with sickle cell disease have a stroke.

Source:
Cohen AR, Norris CF, Smith-Whitley K.
Transfusion therapy for sickle cell disease.
In: Capon SM, Chambers LA (editors). New directions in pediatric hematology. American Association of Blood Banks, Bethesda, U.S.A.; 1996.

³ A brain scan can be done to see if your child is at risk.

Source:
Adams R, McKie V, Nichols F, et al.
The use of transcranial ultrasonography to predict stroke in sickle cell disease.
New England Journal of Medicine. 1992; 326: 605-610.

⁴ To read more, see our information on Strokes.
Acute chest syndrome: This is a complication that affects your lungs. It can be life-threatening. You may get a fever, a cough, chest pain, have difficulty breathing and your

anemia
Anemia is when you have too few red blood cells. Anemia can make you get tired and breathless easily. It can also make you look pale. Anemia can be caused by a number of different things, including problems with your diet, blood loss and some diseases.

anemia may get worse. About half of people with sickle cell disease get acute chest syndrome at some point.

Source:
Boyd JH, Macklin EA, Strunk RC, et al.
Asthma is associated with acute chest syndrome and pain in children with sickle cell anemia.
Blood. 2006; 108: 2923-2927.

⁵Younger children are more likely to get it.

Source:
Castro O, Brambilla DJ, Thorington B, et al.
The acute chest syndrome in sickle cell disease: incidence and risk factors.
Blood. 1994; 84: 643-649.

⁶ It's one of the most common reasons for someone with sickle cell disease to need to go to the hospital.

Source:
Boyd JH, Macklin EA, Strunk RC, et al.
Asthma is associated with acute chest syndrome and pain in children with sickle cell anemia.
Blood. 2006; 108: 2923-2927.

⁵
An enlarged spleen or liver: This happens when blood suddenly pools in your

spleen
Your spleen is an organ that sits on the left side of your body just below your ribs. It helps your body fight infections.

spleen or

liver
Your liver is a large organ that sits on the right side of your body, just below your rib cage. It does several important things, including processing and storing nutrients from food, and breaking down chemicals, such as alcohol.

liver. You can become anemic and get

low blood pressure
If your blood pressure is about 100/60 or less, your doctor may say that you have low blood pressure. Low blood pressure is usually not a problem unless it becomes too low to push blood to your brain and the rest of the body. If you have low blood pressure, you may sometimes feel dizzy when you stand up. To find out what these numbers mean, see blood pressure.

low blood pressure. Doctors call this a sequestration crisis. If you get an enlarged spleen, you may need an operation to remove it.
Aplastic crisis: This means that your

bone marrow
Your bone marrow is the soft material inside your bones. Bone marrow makes and stores blood cells.

bone marrow stops making

red blood cells
Red blood cells are the part of your blood that makes it red. Their main job is to carry oxygen from your heart and lungs out to the tissues of your body. Once these cells unload oxygen, they pick up carbon dioxide. They take carbon dioxide back to your lungs so you can breathe it out of your body.

red blood cells. It can happen if you get an infection. You may need a

blood transfusion
If you've lost too much blood from your body, you may need a blood transfusion to replace it. People with diseases of their blood, like sickle cell anemia, sometimes need blood transfusions to replace blood that doesn't work right.

blood transfusion to treat an aplastic crisis.
Organ damage: The blocked blood vessels that sickle cells can cause may damage your organs. So can the infections you might get. You may get damage to your

kidney
Your kidneys are organs that filter your blood to make urine. You have two of them, on either side of your abdominal cavity, toward your back.

kidneys, spleen, liver and lungs. This can make you feel ill, and even be life-threatening.
In men, a painful, long-lasting erection: This is known as priapism. You might find it embarrassing, but it's important to get treatment. If you don't get treated, this condition can damage your penis.
Joint pain: You may get more aches and pains.
Eye problems: These are caused by abnormal blood vessels at the back of your eye.
Leg ulcers: You can get a leg

ulcer
An ulcer is an open sore. Ulcers can happen in many parts of your body, such as in your stomach, and the skin of your legs, mouth or genitals.

ulcer when a wound doesn't heal well.

People with sickle cell disease also tend to weigh less, on average, than other people, and they usually go through

puberty
Puberty is the time when boys and girls develop secondary sexual characteristics. For boys, the major changes include pubic hair, a deeper voice, and growth of their penis and testicles. For girls, major changes include pubic hair, breasts and starting to have periods. After puberty, girls are able to become pregnant and boys are able to father children.

puberty two or three years later.

No one can predict what will happen to someone with sickle cell disease. But on average, people with sickle cell disease don't live as long as people who don't have the condition. If you want to find out more, see Life expectancy for people with sickle cell disease. But keep in mind that these numbers may not apply to you or your child.

When to get help

It's important you get medical attention for the problems that sickle cell disease can cause. See a doctor if you get:

Source:
Tanyi RA.
Sickle cell disease: health promotion and maintenance and the role of primary care nurse practitioners.
Journal of the American Academy of Nurse Practitioners. 2003; 15: 389-397.

⁷

A fever, especially if it lasts a long time
Pain that doesn't go away if you take ordinary painkillers
Abdominal pain that lasts a long time
Pain or difficulty breathing
Chest pain
Trouble speaking
Changes in your vision
Weakness or numbness in your hands or feet
Headaches that don't go away
An erection that lasts a long time when you're not aroused.

Support groups

Sickle cell disease is a serious condition. But lots of people live with it successfully. It might help to talk with other people who've had experiences similar to yours. Ask your doctor about support groups in your area.

Sources for the information on this page:

Overturf GD, Powars D, Baraff LJ.Bacterial meningitis and septicemia in sickle cell disease.American Journal of Disease in Childhood. 1977; 131: 784-787.

Gaston MH, Verter JI, Woods G, et al.Prophylaxis with oral penicillin in children with sickle cell anemia: a randomized trial.New England Journal of Medicine. 1986; 314: 1593-1599.

Cohen AR, Norris CF, Smith-Whitley K.Transfusion therapy for sickle cell disease.In: Capon SM, Chambers LA (editors). New directions in pediatric hematology. American Association of Blood Banks, Bethesda, U.S.A.; 1996.

Adams R, McKie V, Nichols F, et al.The use of transcranial ultrasonography to predict stroke in sickle cell disease.New England Journal of Medicine. 1992; 326: 605-610.

Boyd JH, Macklin EA, Strunk RC, et al.Asthma is associated with acute chest syndrome and pain in children with sickle cell anemia.Blood. 2006; 108: 2923-2927.

Castro O, Brambilla DJ, Thorington B, et al.The acute chest syndrome in sickle cell disease: incidence and risk factors.Blood. 1994; 84: 643-649.

Tanyi RA.Sickle cell disease: health promotion and maintenance and the role of primary care nurse practitioners.Journal of the American Academy of Nurse Practitioners. 2003; 15: 389-397.

This information was last updated on Nov 06, 2008

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