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FAQs Debunking the myths for Sickle Cell Awareness Month

Sickle Cell Disease Illustration

Sickle cell disease (SCD) is an inherited red blood cell disorder which affects approximately 100,000 people in the U.S. It causes organ damage, pain, low quality of life and even premature death. A blood and marrow transplantation is currently the only known cure.

Unfortunately, many people have misconceptions about transplant due to the lack of awareness and misinformation that is out there on the web. September is Sickle Cell Awareness month which makes it a perfect time to debunk many common myths about blood and marrow transplants for SCD. Addressing these myths and answering questions can help those struggling with SCD make informed decisions about their treatment options.

Debunking the myths; your questions, answered.

 
Can a blood or marrow transplant (BMT) cure sickle cell disease?

A blood or marrow transplant (BMT) can cure SCD. The unhealthy cells are replaced with healthy blood-forming cells from a donor. It doesn’t even involve surgery, but rather a process similar to a blood transfusion. To learn more about the entire process, click here.

My doctor didn’t tell me about transplant. Does that mean it isn’t an option for me?

If your doctor hasn’t mentioned transplant it doesn’t mean that it isn’t an option for you! Ask your doctor about it and they will send you to a transplant doctor who will tell you if transplant is an option for you.

What are the risks and benefits of transplant?

The risks and benefits of transplant can vary from person to person because people respond differently to transplant. A transplant doctor can tell you more.

Could someone with the trait still be my donor?

Many people think that if you have the SCD trait, you cannot be a donor. The truth is, having the trait doesn’t keep someone from being a donor. It is most important that you and your donor have closely matched human leukocyte antigens (HLA), which proteins are found on most cells in your body and are passed down from your parents.

How much does transplant cost?

Transplant can be expensive. If you talk to a case manager at your health insurance company, they can tell you the rules and what your plan covers.  Be The Match has grant programs to help some patients with costs before and after transplant. Call the Be The Match Patient Support Center at 1 (888) 999-6743 to learn more.

How will my life change after transplant?

Your life may change in many ways after transplant. You may not have SCD anymore, but recovering from a transplant takes time. A transplant doctor can talk to you about how your life may change after transplant. You can call us to talk with someone who’s been through transplant before at 1 (888) 999-6743

How many people have had transplant for SCD in the U.S?

Although it is estimated that thousands of people living with SCD could benefit from transplant, less than 1% of people eligible have had transplant. This table below gives you more detailed information.

Did you know…?

  • Only 18% of patients with SCD have a healthy, fully matched sibling donor. People can turn to the Be The Match Registry® for help finding an unrelated donor or umbilical cord blood unit.
  • Only 9% of patients with SCD can find a match through the registry due to the low number of African Americans on the registry and donor unavailability.
  • The chances of an African American patient finding a match on the registry is between 66-76%, the lowest compared to all other populations on the registry.
  • Patients are most likely to match someone of the same ethnic background, and doctors request donors in the 18-44 age group more than 9 out of 10 times.

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