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  1. Sickle Cell Warriors in Cameroon Still Face Dangerous Prejudices and Labeling

    May 28, 2018 by Andrea
    Cameroon

    Photo for illustrative purposes only




    We talk about the stigmatization of sickle cell here in the U.S., especially when it comes to doctors using biased language in their patient notes, which can affect the quality of a person's healthcare long-term. But in some countries, such as Cameroon, such stigma can lead to death.

    As reported by Reuters, many people in Cameroon still hold the belief that children with sickle cell are actually witches or sorcerers who's mission is to destroy the families they were born into. Some are abandoned by their parents, some are purposefully neglected, and, in extreme cases, some are killed. One woman interviewed for the Reuters article describes suffocating her 5-year-old son last year because she was told his illness was mystical and would ruin her life. "I killed my child because he was going to die anyway," she told the news service. "Before, he was suffering greatly. Now, he is at peace."

    This isn't a new development for the country, but since this belief still persists, a lot more must be done to raise awareness and educate communities there, especially since Cameroon has a population of about 400,000 sickle cell warriors. In past years, Cameroon health officials have encouraged genotype testing before marriage and offered some free or reduced treatment costs. However, those living there with SCD now feel that to truly have a chance at ending this disease, genotype tests should be free -- and mandatory.

    You, too, can help sickle cell warriors living in Cameroon. Perhaps, in honor of the upcoming World Sickle Cell Day, you can donate to help equip a sickle cell lab in Cameroon via GlobalGiving.

    Read the full article here.

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  2. This Week in Sickle Cell News: Awareness, Perseverance, and Anti-Stigmatization

    May 21, 2018 by Andrea

    ntjanadonald-nappy-5462


    We're always scouring the internet and social media to find sickle cell questions that need answering, products that have recently been released, and topics that require more discussion -- all of which fuel our own article ideas. This week, we'd like to share our top three favorite write-ups from across the web that tackle sickle cell research issues, show more examples of warrior perseverance, and help doctors overcome biases toward SCD patients.

    Here are the articles that stood out to us these past seven days:

    CONTINUED LACK OF FUNDING
    For 100 years, the scientific community has known about the existence of sickle cell disease; however, only two drugs have been approved specifically for the treatment of sickle cell in that time. Many believe the reason for sickle cell's lack of research funding and awareness is linked to the general apathy about the disease, since a large portion of patients are of African descent.

    Read the full article here.

    DREAM CHASER
    Diagnosed shortly after birth, 13-year-old Aliyana McCrary has been competing in pageants since she was 2. Recently, she won her first title (in a regional competition), and now, she's preparing for nationals. We love this story about how she never lets her condition hold her back. Check out her GoFundMe to help her get to nationals -- any amount raised in excess will be donated to the Sickle Cell Foundation.

    Read the full article here.

    ANTI-STIGMATIZATION STUDY
    A study out of Johns Hopkins School of Medicine tackled the idea that doctors whose patient notes contain stigmatizing language can affect that patient's care long-term. Using two sets of notes -- one without stigmatizing language and one with -- about a hypothetical African-American sickle cell patient, the researchers recorded the different reactions by a group of residents and medical students who'd read one versus the other.

    Read the full article here.

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  3. Houston Teen Starts Nonprofit to Raise Awareness for Sickle Cell Disease

    May 15, 2018 by Andrea
    haileyandhergrandmaFI

    Photo: haileykisses/Instagram



    Hailey Fields is more proof that when it comes to making a difference in the world, it doesn't matter how old you are. Only 13, this eighth grader already has a multitude of accomplishments under her belt -- model, actress, beauty entrepreneur, and nonprofit CEO. The latter was inspired by her grandmother Gale, who passed away from complications of sickle cell at the age of 64, just five months ago.

    Covered By The Blood, Inc., Hailey's nonprofit, was established in 2016 with the goal of helping to raise awareness of SCD and helping to assist families of sickle cell warriors with financial assistance as needed. "Not a lot of people know what sickle cell is," Hailey said in a recent interview with Houston Life. "I know I didn't know about it, so I'm like, I wanna teach other people to know about it."

    Before launching, Hailey did her research on sickle cell and on what it takes to start a nonprofit, and then, approached her mom with a business plan. Her mom invested in Hailey's dream, and since then, through blood drives, donations, and the help of volunteers, the Covered By The Blood crew has been able to support families in their community impacted by sickle cell. Profits from her Hailey Kisses lipsticks and glosses line also go toward her nonprofit.

    Learn more about Hailey and Covered By The Blood here, and if you'd like to join their team, sign up to donate, volunteer, or host a blood drive.

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  4. The Links, Inc. Donates $1 Million to St. Jude for Sickle Cell Research

    May 8, 2018 by Andrea
    St. Jude

    Photo by St. Jude Children's Research Hospital



    Most of us know St. Jude Children's Research Hospital as the place that treats pediatric cancer patients at no charge to the family. But did you know the doctors at this hospital also treat kids with sickle cell (and other life-threatening diseases)? And they do it all through the donations they receive -- their latest from The Links Foundation, Inc. (the philanthropic segment of The Links, Inc., a nonprofit organization of professional Black women) of $1 million is designated specifically for sickle cell research. 

    In a press release published on May 3, St. Jude reports that the donation called the Legacy Grant will go toward ensuring the progresson of three SCD programs: studies on how sickle cell affects cognitive abilities, a counseling initiative for parents of babies with sickle cell in Nigeria, and the development of a mobile app to help warriors practice self-care and disease literacy. "Advancing the care, and ultimately, the cure for sickle cell disease has been at the heart of St. Jude since the hospital opened," Dr. James R. Downing, president and CEO of the hospital said in the press release. 

    This grant is somewhat of a full-circle moment for the research hospital, as the very first grant it ever received back in 1958 -- four years before the hospital was even built -- was also for sickle cell disease research. "St. Jude is an organization whose mission and vision align with ours ... and we greatly admire its deep and longstanding commitment to children with life-threatening diseases like sickle cell disease," Dr. Glenda Newell-Harris, president of The Links stated in the same release.

    Find out more details here.

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  5. There’s a New Stem Cell Method That Has Cured Patients of Sickle Cell

    May 1, 2018 by Andrea
    stem cell

    Photo by Piron Guillaume on Unsplash (Illustrative purposes only)



    Seven adult sickle cell warriors have officially been cured of the disease. And yes, it was done through the use of stem cells -- just not in the way you may think. 

    Typically, in order for a person to undergo a stem cell transplant, their donor must be a family member who has HLA markers (cell proteins that help regulate the immune system) that are a full match, which can be difficult to find. But the doctors at the University of Illinois Hospital in Chicago have developed a new method that allows for donors to be a half-match. "We modified the transplant protocol by increasing the dose of [chemotherapy] radiation used before the transplant, and by infusing growth factor-mobilized peripheral blood stem cells instead of bone marrow cells," Dr. Damiano Rondelli -- hematology professor, director of the Blood and Marrow Transplant program, and one of the authors of this study -- told UIC Today, the university's publication. 

    The original article goes on to say that while the transplants were successful (seven out of eight of them, to be exact), there are still quite  few obstacles preventing patients with sickle cell from receiving this cure, such as medical insurance denial and high chance of stem cell rejection due to frequent blood transfusions. 

    Still, this is an exciting start toward developing a more widespread cure in the future. You can read about all the details in the full article here.


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