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Sickle Cell Disease

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Your red blood cells are supposed to be round and flexible. When they aren’t, it’s hard for them to pass through your blood vessels to deliver oxygen.

When this happens, you may have sickle cell disease (SCD). It’s called sickle cell because your red blood cells become misshapen and look like a sickle or crescent moon. This is an inherited condition and symptoms may show up in infancy. SCD is a chronic condition, which means, if you’re born with it, you’ll have to manage it throughout your life.

Left untreated, sickle cell disease can damage vital organs. That’s why getting care early is so important. Even though SCD is chronic, with the right treatment, it can be effectively managed. Cleveland Clinic’s experts provide comprehensive and personalized treatment for SCD that relieves symptoms and helps prevent serious complications.

Why Choose Cleveland Clinic for Sickle Cell Disease Care?

Skilled collaborative providers:

We believe excellent care happens when we combine our expertise. That’s why at Cleveland Clinic, you or your child will have a team of providers from different specialties working together to develop a comprehensive, personalized care plan. Meet our team.

Caring approach:

Compassionate nonmedical providers — including child life specialists, social workers, care coordinators and patient navigators — are an important part of your team. These experts rally around you or you and your child, answering questions, helping you both feel more comfortable and making sure your experience at Cleveland Clinic is as positive as possible.

Research and innovation:

We never stop studying new ways to treat SCD at Cleveland Clinic. Our clinical trials and research efforts are leading the way toward possible new treatments, like gene therapy, to treat SCD.

Virtual visits:

Not all appointments need to be in person. We also offer virtual visits so you can meet with your providers one-one-one, using an internet connection and a smartphone, tablet or computer.

National recognition:

Cleveland Clinic is a trusted healthcare leader. We’re recognized in the U.S. and throughout the world for our expertise and care.

Diagnosing Sickle Cell Disease at Cleveland Clinic

Sickle cell disease is genetic. If you have it, that means you were born with genes that make your hemoglobin (a blood protein) abnormal. This causes your red blood cells to be sickle- or crescent-shaped, instead of round. And makes them stick together and get stiff.

Because of their unusual shape, sickle cells don’t move easily through your body like normal red blood cells. They can break apart and clog important blood vessels, causing many different types of sickle cell disease with all kinds of symptoms ranging from mild to severe.

Testing for sickle cell disease

In the U.S., testing for sickle cell disease is routine after birth. The test involves pricking your baby’s heel or finger to get a blood sample. You can hold your baby when this is done to calm them. This sample is sent to our state’s newborn screening lab, and if the test is positive, your provider will ask you to get a second blood sample to confirm the diagnosis.

Meet Our Sickle Cell Disease Team

At Cleveland Clinic, we believe in team-based care. That means, you or your child will have providers from many areas who specialize in diagnosing and treating sickle cell disease. This team works closely together to provide extensive and individualized treatment. Your team could include:

Hematologists
Pulmonologists
Cardiologists
Nephrologists
Ophthalmologists
Hepatologists (liver specialists)
Gastroenterologists
Pathologists
Urologists
Obstetricians
Gynecologists
Pain management specialists
Nurse practitioners
Dietitians
Social workers
Child life specialists
Care coordinators (providers who keep you up to date on your treatment plan and advocate on your behalf)
Patient navigators (providers that make sure your care plan is compassionate, private and aligns with your values)

Providers Who Treat Sickle Cell Disease

Locations

Our healthcare providers see patients at convenient locations throughout Northeast Ohio.

Treating Sickle Cell Disease at Cleveland Clinic

There’s no single treatment for sickle cell disease. It’s a chronic condition. And each person will experience it differently. That’s why we work with you or your child to make sure care matches your exact needs. Starting treatment right away can help lessen pain, manage symptoms and reduce the risk of complications.

Preventive care

Your or your child’s provider may recommend certain screening tests as part of treatment. Preventive care helps us keep a close eye on what’s going on so we can assess risks and predict possible complications from the disease. These tests may include:

Transcranial doppler ultrasound (TCD): This test uses sound waves to see how blood is flowing through the brain. It can help predict the risk of stroke.
Echocardiogram (Echo): An echo test takes pictures of the heart’s valves and chambers and shows how well it’s pumping blood.
Pulmonary (lung) function testing: These breathing tests show us how well the lungs are working when you inhale and exhale.
Neuropsychological testing: People with sickle cell are at a higher risk for problems that affect their brain. Regular neuropsychological testing can keep a close eye on cognitive (thinking) skills.

Medications

Most often, we use one or more medications to treat the symptoms of SCD. Not all of these drugs are approved for children. Your child’s pediatric provider will recommend the best medications for your child. They may include:

Disease-modifying agents like hydroxyurea, Oxbryta^® or Adakveo^®.
Pain medications like nonsteroidal anti-inflammatory drugs (NSAIDs) (Motrin^® or Advil^®) or prescription pain relievers.
Antibiotics like penicillin to prevent or treat infections.
Vitamins and supplements like folic acid to help red blood cells form correctly.

Transfusion and red blood cell exchange

We may recommend a blood transfusion or red blood cell exchange (replacing abnormal cells with healthy donor cells). These treatments won’t cure SCD, but they may prevent or treat serious complications like strokes, acute chest syndrome and organ failure.

Curative therapies

Cleveland Clinic experts have the necessary experience to treat people with sickle cell disease who need a bone marrow transplant and gene therapy. We are now a qualified treatment center (QTC) for sickle cell gene therapy and can offer this clinically.

Follow-Up Care at Cleveland Clinic

Since sickle cell disease is a lifelong condition, you or your child will need to have regular follow-up appointments with your providers every three to six months. This includes regular blood and urine (pee) tests and visits with specialists like ophthalmologists. Throughout it all our team will be by your side — answering your questions and guiding you to the care you need.

Taking the Next Step

Having sickle cell disease doesn’t mean you or your child can’t live life to the fullest. Starting treatment early and having ongoing care is key to effectively managing this chronic condition. The SCD experts at Cleveland Clinic are here to help. Working as a team, our specialists will confirm your or your child’s diagnosis and craft a treatment plan to help manage symptoms, get pain relief and help prevent complications. At each step we’ll provide the compassionate support you or your child needs to live the best possible life with SCD.