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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.

Cord blood transplant renews teen’s health – and perspective on life

Posted June 28th, 2013 by Be The Match and filed in News, Patient Stories
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Elizabeth’s story

Elizabeth FeyTeenagers are not always known for their sense of perspective. Elizabeth is the exception to the rule.

The source of Elizabeth’s perspective is cancer – specifically, acute lymphocytic leukemia (ALL), first diagnosed when she was 10 years old. Aggressive treatment put the disease in remission after a month, while Elizabeth continued active treatment for two-and-a-half years, pushing through the chemotherapy pills and check-ups while trying to “be a normal kid.” She was approaching the milestone of five years in remission – the point when she would be considered cured – when things started to change.

“It was winter. I had a bunch of colds and some swelling in my neck that my pediatrician thought was mono,” Elizabeth said. But her oncologist was wary and moved up her routine exam by a few days. “On the drive there, I kept telling myself this wasn’t going to be cancer again. But after we got there, I knew by how concerned my doctor was that it was back.

“At first, I was more mad about being sick than anything. Everything was on track – school, my friends – and I didn’t want to be sick. I was frustrated and sad. I didn’t think it was fair.”

Elizabeth’s mother, Maureen, said, “We were dumbfounded. Her doctors consulted with several top hospitals, and none had ever seen a recurrence after such a long remission.” Because of the recurrence, following the same treatment was not an option.

They decided that a marrow transplant was the best option for Elizabeth. As is often the case, Elizabeth’s only sibling was not a match, so her doctors decided to perform a dual-unit cord blood transplant.

Maureen prepared to be away from home for nearly three months while Elizabeth received two weeks of daily chemotherapy infusions and eight doses of total body radiation in preparation for transplant.

For Elizabeth, “It was mental prep. I just did it. I knew what I had to do. My mom told me that medicine only does half the work. When your mind gives up, your body gives up. So I had to be optimistic and get through it. I told myself, no matter what happens, stick it out. It’s for the best.”

Elizabeth’s transplant and recovery went without a hitch. In all, Elizabeth missed about a year of school, but completed class work with the dedication and support of her school and teachers, who developed plans that allowed her to work from home. When she returned to school midway through her junior year, she rejoined the track teams, and her senior year rejoined the tennis team and was elected class president. She recently celebrated both her high school graduation and the second anniversary of her transplant.

“I’m not happy I was sick, but it changed me,” Elizabeth said. “I have a new perspective on life. I knew there were people who had it worse than I did… Cancer can be seen as a blessing.”

Elizabeth is looking forward to this fall and the next phase of her life: college. “It’s been hitting me lately what I’ve been through. I did all that, I stayed in the moment,” she says. “I’m ready to move ahead!”

To the parents who decided to donate the cord blood that gave her another chance, she said, “I would definitely say thank you. I’d tell them how far I’ve come in two years, that it’s two years I might not have gotten. To help someone live and give them a better quality of life… it’s the greatest thing you can do. They probably did it because they’re nice people, but I would want them to understand that it affected more than just me: my friends, my family … they would all be different without me.”

Maureen says she has changed, too. “I try to live with more gratitude and acceptance,” she said. “I’ve learned never to dwell on things that might upset my day. They say you’re supposed to live for every second – that’s easy to say, but hard to do. You need to try and you’ve got to focus. Your whole life can change in a moment.”

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