Sickle cell disease (SCD)
What is sickle cell disease (SCD)?
Sickle cell disease (SCD) is the most common inherited blood disorder, impacting over 100,000 people of all ages in the U.S. It primarily occurs in people of the following descent:
- African, Mediterranean
- Middle Eastern
- South American
- Southeast Asian
How does sickle cell disease affect your body?
SCD causes the body to produce abnormal red blood cells. Healthy red blood cells are round and flexible. They move easily through blood vessels to bring oxygen to different parts of your body. Sickle cells are misshapen, hard and sticky. They can clog blood vessels, leading to:
- Infections
- Low blood count
- Organ damage
- Severe pain (pain crises)
- Strokes
What are the types of sickle cell disease?
SCD includes several types of blood disorders. The main types are:
- Sickle cell anemia (HbSS): The most common and severe type. It happens when you’re born with two sickle hemoglobin genes.
- Hemoglobin SC disease: A milder type that happens when you’re born with a sickle hemoglobin gene and a hemoglobin C gene.
- Sickle beta-thalassemia: This type can be mild or severe. It happens when you have a sickle hemoglobin gene and a beta-thalassemia gene.
How does blood or marrow transplant (BMT) work for SCD?
Steps in the transplant process:
- Preparation: The process begins with chemotherapy (chemo) to destroy the unhealthy blood-forming cells.
- Transplant: You receive healthy donor cells through an intravenous (IV) catheter, similar to a blood transfusion. These cells travel to your bones, where they make new, healthy blood cells.
- Recovery: Recovery lasts for several months. Your doctor will watch you closely to manage complications like infections or side effects. You may need to stay at or near the transplant center. Support from your care team is key during this phase.
While a transplant can stop further damage caused by SCD, it cannot fix existing organ damage or chronic pain. Learn more about how a BMT works.
Types of transplants used for SCD:
The most common BMT transplant type for SCD is an allogeneic transplant, which uses healthy cells donated by:
- A family member
- An unrelated donor
- Umbilical cord blood
When should I (or my child) see a transplant doctor?
A transplant doctor can help you at any point in your care journey. Seeing a transplant doctor early can help you decide if and when BMT is the right choice.
Your doctor might recommend a transplant if you’ve had:
- More than 3 severe pain crises in 2 years
- A stroke or silent stroke
- Acute chest syndrome 2 or more times in the last 2 years
- 8 or more red blood cell transfusions per year
- High blood pressure in the lungs (pulmonary hypertension)
- Chronic pain lasting longer than 6 months
- Ultrasounds that show you may be at a high risk for having a stroke
Your first appointment with a transplant doctor
At your first appointment, the transplant doctor will:
- Review your medical history
- Discuss your treatment options
- Explain the risks and benefits of a transplant
- Recommend the best time for you to get a transplant and prepare for treatment
- Start a donor search, even if you don’t need a transplant right away. This helps your doctor get a head start if you need a transplant later.
Questions to ask your doctor
Asking questions can help you understand your treatment options so you can decide what’s best for you. Sharing your concerns and thoughts is an important part of the decision-making process with your care team. Questions you may want to ask:
- Is transplant an option for me or my child’s specific type of SCD?
- What are the chances that transplant will cure my SCD?
- What are the risks of waiting or trying other treatments before transplant?
- Does my age or health affect transplant outcomes?
- What are the potential side effects of transplant?
- How can side effects be managed?
- How will my quality of life change with transplant?
These questions can help you make informed decisions about your treatment plan. Learn more about planning for transplant.
Complications and risks of transplant for SCD
While BMT can cure SCD, it also comes with risks:
- Graft-versus-host disease (GVHD): This happens when the new donor cells attack your body, like your skin, liver, and other organs.
- Infections: You have a higher risk for infections while recovering from transplant.
- Organ damage: Chemotherapy may damage your organs like your heart, lungs or kidneys.
- Bleeding: You may have extra bleeding while recovering from transplant.
Your care team will watch you closely and treat any side effects.
Personalized support for your sickle cell transplant journey
Get the help you need during your transplant journey. Our Patient Support Center offers one-on-one guidance and resources. We can help you and your loved ones understand your options, navigate challenges, and find emotional and practical support.
Warrior Package
Receive support and empowerment throughout your journey with a free Warrior Package. Each kit includes resources, an appointment journal and goodies.Sickle cell resources
Resources to help you navigate your transplant journey.Get involved
You have the power to change lives. Use that power for good; join the movement. With NMDP, good goes a long way.
Our partners
We’re proud to partner with these organizations who support patients with sickle cell disease.
MTS Sickle Cell Foundation
Sickle Cell Disease Association of Illinois
Sickle Cell Transplant Advocacy & Research Alliance
Sickle Cell 101
Sickle Cell Foundation of Minnesota
Sickle-Inspired
Sickle Cell Community Consortium
Sickle Cell Reproductive Health Education Directive
