Sickle Cell Disease

Sickle cell disease is a lifelong condition. Our team is here to provide personalized support at every stage for children, teens and adults.

Sickle cell disease is an inherited blood disorder that affects the shape and function of red blood cells. Over time, it can cause pain episodes, anemia and organ damage.

At MU Health Care, we provide lifelong care for people of all ages with sickle cell disease. Our pediatric and adult teams offer advanced treatments, fast access for urgent needs and support to help manage symptoms and stay well.

Your or your child’s care is led by a hematologist and supported by nurses, specialists and social workers. We focus on preventing complications, relieving pain and helping you plan for the future.

For children with sickle cell disease, care starts early. We connect with families quickly after newborn screening and provide vaccines, hydroxyurea therapy and close coordination with your child’s doctor.

For adults, we help manage pain, fatigue and long-term health. We also offer trait counseling, reproductive planning and support for families. Our dedicated nurse navigator helps young adults transition smoothly from pediatric to adult sickle cell care.

Whether you're newly diagnosed or have been living with sickle cell disease for years, we're here to guide your care and support your health.

Our Approach to Sickle Cell Care

Sickle cell disease makes it harder for blood to flow normally. Misshaped cells can break down early or block small vessels, leading to pain and other complications.

At MU Health Care, we bring together hematologists, pain specialists, pulmonologists, nephrologists, ophthalmologists and others to provide seamless, lifelong care. We also coordinate with your primary care provider to help manage testing, immunizations and follow-up care.

Sickle Cell Symptoms and Complications

Sickle cell disease can cause a range of symptoms. Some appear early, and others build over time.

Common symptoms and complications include:

Acute chest syndrome: Sudden chest pain, fever or trouble breathing.
Anemia: Low red blood cell levels, which may cause fatigue or pale skin.
Bone and joint pain: Sharp or deep pain, often in the arms, legs or back.
Infections: Higher risk due to spleen damage.
Leg ulcers: Slow-healing sores, especially on the lower legs.
Organ failure: Long-term stress on kidneys, liver or heart.
Priapism: Painful, prolonged erections from trapped blood.
Pulmonary hypertension: High blood pressure in the lungs causing shortness of breath.
Splenic sequestration: Sudden spleen enlargement, which can be life-threatening, especially in children.
Stroke: Blocked blood flow in the brain, which is life-threatening, usually with symptoms of weakness, headaches or confusion.
Vision loss: Damage to eye blood vessels that affects sight.

When to Call Your Doctor

Call your care team right away if you experience:

Fever
Chest pain or trouble breathing
Pain that won't improve with home care
Sudden weakness, confusion or slurred speech

If symptoms are severe or sudden, call 911 or go to the ER.

Types of Sickle Cell Disease

Sickle cell disease is inherited and starts with a change in the HBB gene. This affects hemoglobin, the protein that helps red blood cells carry oxygen. As a result, the cells become stiff and curved and don’t live as long. They can also block small blood vessels, leading to pain and other complications. There are several types of sickle cell disease, and we confirm your type and personalize your care accordingly.

Hemoglobin SS (HbSS, "sickle cell anemia"): The most common and typically most severe. We focus on early treatment and monitoring.
Hemoglobin SC (HbSC): Usually milder. We watch closely for eye problems and pain episodes.
Sickle beta thalassemia (HbS/β-thal): Severity varies. We adjust care based on thalassemia type.
Other rare types (HbSD, HbSE, HbSO): Managed by our hematology team with personalized plans.

Sickle Cell Trait vs Disease

Trait: One abnormal gene, usually with no symptoms but some risks associated with dehydration, extreme heat or intense exercise. We offer trait counseling, partner testing and guidance for work, sports and pregnancy.
Disease: Two abnormal genes with an elevated risk for pain, anemia, infection and organ damage. We offer complete care from infancy to adulthood.

Who's More Likely to Carry These Genes?

Sickle cell conditions are more common in people with African, Mediterranean, Middle Eastern, South Asian or Central and South American ancestry.

In Missouri, we’re notified of newborn screening results and connect families to early care and prevention.

How We Diagnose Sickle Cell Disease

We personalize your diagnosis and care plan based on your age, symptoms and history.

For Children

Newborn screening: We contact families as soon as we're notified of results.
Early visits: Babies start treatment around 5-9 months, once the natural protection they’re born with starts to decrease.
Coordinated care: We work with your pediatrician on growth, development and vaccinations.

For Adults

At your first visit, we review your history, symptoms and any past testing. Ongoing tests may include:

Blood tests
Genetic counseling for family planning
Imaging (X-ray, MRI, echocardiograms)
TCD scans for kids over age 2

How We Treat Sickle Cell Disease

Sickle cell disease affects everyone differently, and treatment is evolving. At MU Health Care, we take a proactive, long-term approach focused on reducing complications, relieving pain and supporting your daily life.

Your care is led by an experienced hematologist and supported by a team of nurses, counselors and specialists. We personalize your plan based on your age, symptoms and type of sickle cell disease.

Medications

We use evidence-based medicines to help reduce pain episodes, improve blood flow and lower your risk for serious complications.

Common medications for sickle cell disease include:

Crizanlizumab: A monthly infusion that lowers the number of pain episodes.
Hydroxyurea: Started in infancy, this medication reduces pain episodes, acute chest syndrome and need for transfusions. It’s generally well tolerated and often improves anemia.
L-glutamine: Helps reduce the frequency of pain episodes and hospital visits.

We follow the latest research and offer new treatments that are proven to be safe and effective.

Blood Transfusion Therapy

Transfusions are a key part of care for many people with sickle cell disease and carefully managed to reduce iron overload and other risks.

We offer:

Exchange transfusions that remove sickled cells and replace them with donor cells to improve oxygen delivery and reduce complications.
Simple transfusions that add healthy red blood cells without removing any.

Pain Management

Pain episodes are one of the most challenging symptoms of sickle cell disease. We help find the cause and treat it effectively, not just mask it.

Treatment options include:

Blood transfusions
Counseling and behavioral support
IV fluids
Pain medications

By preventing or treating early triggers, we lower your risk of hospital visits and help reduce the need for addictive pain medications.

Infusion Therapy and Day-Stay Program

Our infusion center provides a safe and convenient way to manage pain and stay ahead of sickle cell disease complications.

We offer the region’s only day-stay infusion program for adults with sickle cell disease — providing care in a comfortable setting with no overnight stay.

Benefits include:

A dedicated team familiar with your personalized care plan
Exchange transfusions delivered on-site
Fewer ER visits and hospital stays
Twice-weekly visits for IV fluids and pain medications

Advanced and Emerging Therapies

New treatments are changing what’s possible for people with sickle cell disease.

Gene therapy: Alters or replaces the gene that causes sickled red blood cells to form.
Stem cell transplants: Replaces bone marrow stem cells with healthy donor cells to potentially cure sickle cell disease.

We’ll walk you through your options and work with collaborating providers when appropriate. Our team coordinates testing, records and appointments to make your care simpler and more accessible.

Pediatric Care and Early Intervention

Our pediatric hematology team focuses on early, preventive care to support lifelong health.

Hydroxyurea is started in infancy to reduce complications and build healthy routines.
If urgent issues arise, we offer rapid access — often the same or next day.
We coordinate with your child’s primary care provider to track growth, development and immunizations.