What is sickle cell disease (SCD)?
SCD is an inherited blood disorder that affects over 100,000 people of all ages in the U.S. It’s passed on from parents to children through genes. Genes are the instructions that tell your body how to work. SCD causes your body to make abnormal hemoglobin. Hemoglobin is a protein in your red blood cells.
Healthy red blood cells are round and flexible. They move through your small blood vessels and bring oxygen to all parts of your body. With SCD, your red blood cells are misshapen, hard and sticky. They get stuck in your blood vessels and clog them. This can cause you to have pain, infection, organ damage, low blood count, strokes and other serious health problems.
People with sickle cell trait got the sickle cell gene from 1 parent but not both. Most people with sickle cell trait don’t have any symptoms of SCD. They can be blood, marrow and organ donors.
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|How are SCD symptoms treated?|
|Can SCD be cured?|
|Resources for you and your family|
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How are SCD symptoms treated?
SCD affects each person differently, so there is no “best treatment” for everyone with SCD. Hydroxyurea and L-glutamine are the only approved medicines for SCD. They can help lower the number of pain crises, but they do not make SCD go away.
Other options to reduce SCD symptoms include:
- Pain medicine
- Blood transfusions
- Medicines to prevent blood clots
These treatments will not cure the disease, but they may help you feel better.
Can SCD be cured?
Constance, transplant recipient for SCD
Sickle cell disease and transplant, in my own words (PDF)
Yes! A blood or marrow transplant (BMT) is the only known cure for SCD. BMT is not surgery. It’s a treatment that takes healthy blood-forming cells from a donor and gives them to you through an intravenous (IV) infusion to replace the unhealthy cells.
Who can get a BMT?
- Kids and teens with severe SCD may be able to get a BMT. If they have a brother or sister who matches them and can be their donor, they can get a BMT at some hospitals. Otherwise, they may be able to get a BMT if they join a clinical trial.
- Currently, adults with severe SCD are only able to get a BMT if they join a clinical trial. Find clinical trials for SCD at JCCTP.org/sickle-cell.
- Ask your doctor about early HLA typing. You may not need a transplant right now, but early typing will help prepare you and your doctors if you need one in the future.
How is a donor found?
Almost 1 in 5 people with SCD have a healthy, fully-matched sibling donor. Siblings can be your donor even if they have sickle cell trait. If you don’t have a matched donor in your family, your doctor can search the Be The Match Registry®. Finding a donor can take time, so your doctor may want to search the Registry even if you don’t need a transplant now.
If you are a family member, caregiver or friend who wants to join the registry in hopes of helping a patient with SCD, visit Join.BeTheMatch.org/CureSCD.
Doctors and researchers are studying a new treatment called gene therapy to see if it can cure SCD. Gene therapy is only available through a clinical trial. You can find gene therapy clinical trials on JCCTP.org. Talk with your doctor about all treatment options for you or your loved one. To find a clinical trial for SCD:
Resources for you and your family
Our Patient Support Center offers free programs and resources for you and your family.
Bilan Jama, MSW, OPN-CG BMT, Patient Navigator
Call or Text: 1 (888) 999-6743
Learn more about SCD and transplant (PDF)
Request a connection with someone who's had a transplant for SCD.
Find out about financial grants (PDF)
Order education materials for sickle cell disease and transplant.
Be The Match is proud to partner with these organizations who support patients with SCD.