Sickle Cell Disease Booth in a Box
This free toolkit includes an array of patient-centered resources and giveaways to educate people about marrow transplant for sickle cell disease. It can be used at community health fairs, conferences and other events. Order your free booth in a box.
What is sickle cell disease (SCD)?
SCD is a blood disorder you’re born with. It’s caused by abnormal hemoglobin. Hemoglobin is in the red blood cells that carry oxygen throughout your body. In SCD, red blood cells become stiff and form a sickle shape. They block blood flow in the small veins causing severe pain known as pain crisis. This can damage your lungs, brain, kidneys, and other organs.
SCD is passed on from parents to children through genes. Genes tell the body how to make everything it needs to work properly. Defective genes cause the bone marrow to make abnormal hemoglobin and red blood cells. Bone marrow is the soft, spongy tissue inside bones. It’s where blood-forming cells (stem cells) live. Blood-forming cells make all the cells in your blood, including red blood cells.
How does blood or marrow transplant (BMT) work for SCD?
BMT, also called a bone marrow transplant or blood stem cell transplant, replaces the unhealthy blood-forming cells with healthy ones. It’s the only known cure for SCD. However, it’s only used in patients with severe SCD. Severe SCD means the patient has had a stroke, organ damage or frequent pain crises.
Allogeneic transplant is used for SCD. This type of transplant uses healthy cells donated by someone else to replace the cells that make faulty hemoglobin. These healthy cells can come from a family member, unrelated donor or umbilical cord blood. First, you get chemotherapy (chemo), to kill the cells that make faulty hemoglobin. Then, the healthy cells are given to you through an intravenous (IV) catheter just like a blood transfusion. The new cells travel to the inside of your bones and begin to make healthy blood cells.
The entire transplant process, from when you start chemo until hospital discharge, can last weeks to months. This is followed by many months of recovery near the transplant center and at home. Your transplant team will closely watch you to prevent and treat any side effects or complications. Transplant doesn’t reverse any organ damage that has already happened, but it can stop more damage from happening.
When should I (or my child) see a transplant doctor?
If you or your child have severe SCD, you should talk to a transplant doctor right away. They can explain the risks and benefits of transplant. Whether it’s is the best treatment option for you depends on things such as your:
- How much organ damage you have
- How often you get blood transfusions
- How often you have pain crises
- Your first appointment with a transplant doctor
At your first appointment, the transplant doctor will:
- Review your medical history
- Talk with you about your options
- Discuss the risks and benefits of 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 it right away. This can help you get a transplant faster if it’s needed later.
Questions to ask your doctor
Ask questions so you understand your treatment options and can make decisions that are best for you. Questions you may want to ask include:
- What are the risks of waiting or trying other treatments before a transplant?
- Do I (or my child) have any risk factors that might affect how well transplant will work?
- Does my age (or child’s age) affect the risks of transplant?
- What are the possible side effects of transplant? How can they be reduced?
- How might my (or my child’s) quality of life change over time, with or without transplant?
Most recent medical review completed March 2017.