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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.

Honored and humbled for a second chance at life

Posted June 13th, 2017 by Be The Match and filed in Patient Stories
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Khalia was just 3 months old when she was diagnosed with sickle cell disease. After 18 long years of dealing with pain, she finally received her cure: a bone marrow transplant from an unrelated donor on the Be The Match Registry®.

Khalia, transplant recipient (right), with her mom

Kimyacta, Khalia’s mom, remembers how ready she and her daughter were once the donor was identified. “We had many meetings to prepare us for this journey and the journey itself was literally life changing!”

Khalia is now pain free and enrolled in college where she’s pursuing her degree to become a Child Life Specialist. She and her mom continue to let others know how important it is to become a donor. “I hope I’m able to save a life just as someone did for my child,” says Kimyacta.

A bone marrow transplant is the only known cure for sickle cell disease. Join the registry and be someone’s cure!

Choosing transplant to cure her sickle cell disease

Posted June 12th, 2017 by Be The Match and filed in Patient Stories
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On August 1, 2012, Aya got her second chance at life while a patient at Hackensack University Medical Center – she received a bone marrow transplant that cured her of sickle cell disease (SCD).

Aya, transplant recipient

For Aya, her transplant was a welcome relief from a lifetime of dealing with her illness.

“I was born with sickle cell anemia,” she said. “One of the main stresses of the sickle cell disease is pain crisis. I began experiencing this painful ordeal from the age of three.”

After her first pain crisis, managing her symptoms became a familiar part of Aya’s routine.

“The ordeal would start with pain that would escalate,” she said. “When it got to its worst, my mom would have to take me to the hospital.”

Once in the hospital, Aya said her medical team did everything they could to help her manage sickle cell disease.

“Once they admitted me, the process would begin,” she said. “Generally, they would always hydrate me and give pain medication. I would always require oxygen – because of the pain, I could not take deep breaths.”

While Aya’s childhood revolved around managing her sickle cell, as she grew, her family knew she would need a bone marrow transplant.

“The older I got, my stays in the hospital increased and my pain levels would escalate,” she said. “I underwent a bone marrow transplant from an anonymous donor. The procedure was a success and I am now sickle cell free!”

A bone marrow transplant is the only known cure for SCD. Join the registry and be someone’s cure!

Being a voice for patients with sickle cell disease

Posted June 12th, 2017 by Be The Match and filed in Patient Stories
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Ines received a bone marrow transplant for sickle cell anemia in 2009 during her senior year of high school.

Ines, transplant recipient

Since her transplant, Ines has been focused on becoming a voice for other patients.

She studied molecular biology and English at the University of Pittsburgh.

Ines has also worked with the Children’s Hospital of Pittsburgh Sickle Cell Team as a research assistant. She has dedicated her life to sickle cell research and awareness – including sharing her story at legislative briefings where she offered her perspective on the treatment of sickle cell disease.

As her future continues to expand post-transplant, Ines said she is forever grateful that her match was found.

“My marrow transplant has made it possible for me to plan for the future instead of having to plan around my illness,” she said.

A bone marrow transplant is the only known cure for SCD. Join the registry and be someone’s cure!

Pulling together to overcome sickle cell disease

Posted June 12th, 2017 by Be The Match and filed in Patient Stories
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In January 2016, Desiree became the first adult at the Kansas City Cancer Center to be treated with a bone marrow transplant as a cure for sickle cell disease.

Desiree, transplant recipient

While Desiree was anxious, the timing of her transplant was critical – if her treatment was delayed, she was facing severe and irreversible lung damage that would have made her transplant even riskier.

Despite her nerves, Desiree said her support system got her through the time in the hospital.

“I don’t like being away from home, so it was hard spending all that time away,” she said. “Thankfully, my mother, sister and grandparents were with me the whole time. They put my needs before their own and made sure I had things from home to comfort me.”

Although her family was with her throughout her transplant journey, Desiree’s recovery was difficult due to a complication from sickle cell.

An earlier sickle cell pain crisis had left her with avascular necrosis in her right hip and barely able to walk. This condition occurs when bone tissue dies from lack of blood supply. Her doctors had her get out of bed and walk each day to regain her strength.

Now that she is healthy, Desiree said she is focused on helping raise awareness for sickle cell disease.

“We could cure others of the disease and find more perfect matches if more minorities were bone marrow donors,” she said. “Now I can go more places and do more things without having to worry about pain or being admitted to the hospital. I’ve missed out on doing and enjoying a lot but, my health is a lot better and continues to improve. I’m very optimistic about my future.”

A bone marrow transplant is the only known cure for SCD. Join the registry and be someone’s cure!

Justin’s journey with sickle cell and transplant

Posted June 12th, 2017 by Be The Match and filed in Patient Stories
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Justin had his first sickle cell crisis when he was six months old – for his mother, Kari, this was a day she will never forget.

Justin, transplant recipient

“He wouldn’t stop crying and nothing I did could help him,” she said. “This was the beginning of a lot of heartache, pain and tears, not just from him, but from me too.”

After tests showed Justin’s younger brother was not a match, Kari said the family was at a crossroads.

“My husband and I considered having another baby in hopes that this baby would save Justin’s life,” she said. “I prayed and there was a perfect match.”

Justin had his life-saving transplant in July 2014 – with Kari by his side for every step of the journey.

“I stayed with him every day,” she said. “When he hurt, I hurt. When he could not eat, I could not eat.”

While Justin has had some post-transplant complications including migraines and kidney issues, Kari said he is a healthy and thriving teenager.

“Life is great,” she said. “Justin gets to go to school and socialize. For so long, everything was about Justin and he was the only thing that mattered in our family. Now, life does not revolve around Justin and his sickle cell.”

A bone marrow transplant is the only known cure for SCD. Join the registry and be someone’s cure!

Taking a leap of faith for her cure

Posted June 12th, 2017 by Be The Match and filed in Patient Stories
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In 2008, twelve-year-old Amber’s fight against sickle cell disease had gotten to the point where she had suffered a stroke and had many surgeries.

Amber, transplant recipient

For the next two years, she and her family found themselves anxious as they were educated about a bone marrow transplant as a potential treatment option.

“My mom was scared,” Amber said. “It was a leap of faith.”

When doctors told the family that a 10/10 match was found, Amber put her nerves aside and prepared for transplant.

“I was afraid of losing my hair, chemotherapy and losing my friends,” she said. “I didn’t really know who else was going to be my match – if this unrelated donor would not have done it.”

After her transplant, Amber spent a month in the hospital before she went home to recover.

“It was difficult but, well worth it,” she said.

Now, as a healthy college student at George Mason University, Amber offers this advice to sickle cell patients contemplating a bone marrow transplant.

“Don’t give up hope,” she said. “You feel like you are going to be in pain forever but, just stay hopeful. You are already going to be in pain forever so, just hang in there for the transplant.”

While Amber has not met her donor, she said her entire family is looking forward to thanking the person who saved her life.

“I wouldn’t even be able to say anything – I would just cry,” Amber said. “I would tell them how thankful and how blessed myself and my family is because of this. This is not just about the patient who has sickle cell, this is about the family as well. I am so blessed and so thankful.”

A bone marrow transplant is the only known cure for SCD. Join the registry and be someone’s cure!

Sickle cell disease conquered through transplant

Posted September 13th, 2016 by Be The Match and filed in Patient Stories
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As a young adult in her early twenties, Constance was embarking on the next stage of an already successful modeling career. Photos of her had already appeared in magazines, and she was beginning to work with designers from popular reality television shows.

But, the sickle cell disease (SCD) she had been coping with since birth suddenly got worse and caused her modeling career to take an unexpected detour. “I tried to work through my disease and the pain, but my body just couldn’t take it,” she says.

sickle-cell-illustration_300pxSCD is an inherited blood disorder where red blood cells become hard, sticky and sickle-shaped. These cells can’t carry oxygen well and they block blood flow. Patients have repeated episodes of excruciating pain and worsening permanent damage to vital organs.

So instead of runways, TV sets and photo shoots, Constance was spending more and more of her time in hospitals due to pain episodes and other harmful effects caused by the disease.

“I was either hospitalized anywhere from 3 to 10 days or rushed to the ER every month,” she recalls. “I had to bow out of the second half of my modeling contract because I couldn’t get healthy enough to even leave my house, let alone the state.”

Transplant offers hope of a cure

Today, Constance is a healthy 29-year-old ─ and one of a growing number of people with SCD who had treatment with a blood or marrow transplant, the only known cure for SCD.

Constance had transplant in 2012, when she was 25 years old. Her donor was her younger sister, Samantha, who was a 10 of 10 HLA (human leukocyte antigen) match.

Constance, transplant recipient

Constance, transplant recipient

Like many transplant recipients, Constance calls the day of her transplant “my new birthday” and her second chance at life. And like many transplant recipients, it also took a while for Constance to adjust to life after transplant. Constance remembers that it was only after her “first new birthday,” when she was finally off of all her medicines, that she told herself, “Okay, this is real. You have a life now.”
And her life now is very busy. Her modeling career is back on track and she’s sharing her experience with others ─ including writing a book.

Reflecting back on her time before transplant, when SCD limited her modeling career, her social life, and her plans for the future, Constance says she feels thankful every day. “I never ever could have imagined that I would have the life I have now, and that I would be able to do the things I can now.”

September is Sickle Cell Disease Awareness Month – help us spread the word by sharing our Facebook post about SCD awareness through our Patients Connect page. And to learn more about Constance’s story, visit her website at road2thecure.com.