Complications from sickle cell disease (SCD) can affect many parts of daily life. They may interfere with sleep, energy, school or work, family responsibilities, relationships, finances, and mental health.
Complications are health problems caused directly by SCD, while related conditions develop over time from the disease’s long-term effects or its treatments. This article covers the most common SCD complications, how they can affect your daily life, and why regular monitoring is important.
Sickle cell disease changes the shape of red blood cells. Instead of staying round and flexible, the cells can become stiff and sickle-shaped. These cells can get stuck in small blood vessels, slowing or blocking blood flow.
Sickled cells also break down faster than healthy red blood cells. Because your body can’t replace them quickly enough, you can develop chronic anemia, leaving you with fewer red blood cells to carry oxygen.
Over time, your tissues and organs may not get enough oxygen, increasing the risk of organ damage and other health problems.
Several factors can affect your risk of developing complications, including:
However, having one or more of these factors isn’t a guarantee that you’ll develop complications. Access to comprehensive sickle cell care and healthy habits can make a real difference.
Regular screenings, preventive treatments, and care from clinicians who understand SCD can help catch problems earlier. But not everyone has easy access to that care, and past experiences of being dismissed can make it harder to keep seeking help.
Understanding your risk factors helps you and your healthcare team know what to watch for. Below are some potential complications people with sickle cell may face.
Pain is one of the most common complications of sickle cell disease. It can occur suddenly during a pain crisis or persist as chronic pain.
These episodes, also called vaso-occlusive crises, happen when sickle-shaped red blood cells, white blood cells, and platelets block blood flow through narrow vessels. They can cause sudden pain, most often in the arms, legs, back, chest, or abdomen.
Pain crises can last for several hours or days. Some episodes are severe enough to require emergency care or a hospital stay.
Although pain crises can happen without a clear cause, common triggers include:
During a pain crisis, you may need to cancel plans or rely on family or friends for help until the pain improves. Because pain crises often happen without warning, they can make it hard to plan ahead. Pain from SCD can also be difficult because it isn’t always visible to other people, and many people with SCD have had their pain questioned, dismissed, or undertreated.
Unlike pain crises, chronic pain occurs at least half the time and lasts for six months or longer. It continues between pain crises and can result from repeated pain episodes or complications such as avascular necrosis causing bone damage.
Living with chronic pain can make it harder to perform daily activities, work, attend school, manage family responsibilities, stay active, and get enough sleep. It can also lead to depression and anxiety.
Sickle cell disease can affect blood flow to the brain, sometimes leading to a stroke or changes in thinking and memory.
A stroke happens when blood flow to part of the brain is interrupted. In SCD, sickle-shaped red blood cells and sticky platelets and white blood cells can block blood flow to the brain, increasing the risk of stroke. A stroke may affect your strength, walking, speech, memory, and your ability to do everyday activities.
Unlike a typical stroke, a silent stroke may not cause obvious symptoms, but it can still damage the brain. Silent strokes are common in children and adults with sickle cell disease and may affect learning, attention, and school and work performance.
If you notice symptoms of stroke such as weakness on one side of the body, trouble walking or speaking, or sudden changes in balance or vision, seek emergency medical care immediately.
Reduced blood flow to the brain may affect how it works, making it harder to concentrate, remember, or process new information. As a result, you may struggle to keep up with school or work, follow instructions, and manage everyday tasks. These challenges may be misunderstood as behavior problems, lack of effort, or poor performance, especially if others don’t understand how SCD can affect the brain.
Some lung and heart complications develop suddenly and require emergency care, while others are harder to notice at first.
Acute chest syndrome happens when blocked blood flow, a lung infection, or other problems prevent the lungs from getting enough oxygen. This causes a sickle cell crisis in the lung that looks like pneumonia on a chest X-ray.
Symptoms may include:
Acute chest syndrome is a medical emergency that requires prompt treatment.
Pulmonary hypertension is high blood pressure in the blood vessels that carry blood to the lungs. It usually develops gradually, so you may not notice symptoms at first.
As it progresses, you may become tired more easily or feel short of breath during daily activities like walking or climbing stairs.
Left untreated, pulmonary hypertension can put extra strain on your heart and potentially lead to heart failure and an increased risk of death.
Sickle cell disease can affect how well your kidneys reduce the amount of water in urine. When kidneys don’t reabsorb enough water, you produce more urine and may need to urinate more often, especially at night.
Some people may develop chronic kidney disease (CKD), a condition in which the kidneys gradually lose their ability to filter toxins from the blood. Kidney disease may not cause symptoms in its early stages, so regular checkups with your healthcare provider can help detect and treat kidney problems.
Sickle cell disease can affect the entire body, including the eyes, bones, and skin.
Sickle cell disease can injure blood vessels in the retina, the light-sensitive tissue at the back of the eye. This can lead to sickle retinopathy, which can affect your vision.
When sickled cells block blood flow to the bones, most often in the hip or shoulder, part of the bone may begin to break down. This condition is known as avascular necrosis. It can cause:
Leg ulcers are a complication of SCD. These slow-healing wounds usually occur on the ankle and can be painful, especially with standing or walking. They are usually treated with frequent wound care and special dressings to promote healing, but they can last for years even with treatment.
SCD can also lead to a few other conditions.
This happens when sickle cell disease damages the spleen. Because the spleen helps fight infections, people with SCD have a higher risk of serious infections, including pneumonia and meningitis. Most children younger than five years old are treated with penicillin to prevent infections and need routine vaccinations (and a few extra vaccines) to help lower this risk.
When red blood cells break down, they release hemoglobin, which is broken down into bilirubin. In some people, high levels of bilirubin can lead to gallstones.
Gallstones may cause pain in the upper right side of the belly that often worsens with eating. If you have gallstones and typical symptoms (pain and nausea that worsen with eating), your healthcare provider may recommend surgery to remove the gallbladder.
Healthcare providers sometimes use repeated blood transfusions to help manage SCD, but this treatment can lead to iron overload.
Extra iron from transfusions can build up in the body and damage organs if left untreated. Your hematologist may recommend regular blood tests and a special type of MRI to monitor your iron levels. Treatment involves medication that binds to extra iron so the body can remove it through the urine or stool.
Anxiety and depression are common in people with sickle cell disease. Pain crises, chronic pain, frequent medical appointments, certain pain medications, and concerns about complications can all affect emotional well-being.
People with SCD may also face stigma or discrimination, including feeling misunderstood or having their pain dismissed in healthcare settings. This can make it harder to ask for help or speak up about their care.
If you’re finding it difficult to cope, talk with your healthcare provider or a mental health professional. Counseling, peer support groups, medications to treat depression and anxiety, and patient advocacy organizations can help you feel less alone and cope better.
Following your treatment plan and getting regular checkups can help prevent some complications or catch them earlier. Still, getting regular care isn’t always simple. Transportation, insurance, cost, limited access to SCD specialists, and past experiences of not being believed can all make regular follow-up harder.
Depending on your age, symptoms, and type of sickle cell disease, your doctor may recommend routine blood tests, eye exams, kidney tests, or other screenings to look for early signs of organ damage and other complications.
If you or your child has sickle cell disease, ask your doctor which screenings and treatments can help prevent complications and support long-term health.
Some sickle cell disease complications require immediate medical attention. For many people with SCD, going to the ER can bring worry about being dismissed, misunderstood, or not treated quickly enough. Knowing which symptoms need urgent attention can help you decide when it may be worth seeking emergency care, even when getting that care feels difficult or exhausting.
Seek emergency care if you experience:
Sickle cell disease can affect many parts of the body, but regular care can help prevent some complications and catch others early. Knowing what symptoms to watch for and when to get medical help can make it easier to protect your health over time.
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