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  1. Music Therapy Pilot Study Gives More Evidence to Music’s Pain-Relieving Abilities

    July 24, 2018 by Andrea

    music therapy


    There's been clinically based evidence of music therapy benefiting sickle cell warriors for a little while now, but just recently, a pilot study on the subject went a bit further, showing that even just one session can help lessen a patient's pain and boost their mood. 

    Specifically, this study, which was published in the summer 2018 issue of the Journal of Music Therapy, focused on the implementation of electronic music improvisation as a pain reliever in adult SCD warriors. To get started, the researchers randomly divided 60 participants into one of three types of music therapy sessions: electronic music improvisation with a music therapist, recorded music listening, or no music therapy at all. One of these three methods was added to the patients' regular treatment regimens. 

    The results showed that option one -- electronic music improvisation with a music therapist -- significantly improved a patient's pain intensity and mood, also implying that the presence of a music therapist was key.  As reported by Sickle Cell Anemia News, one of the study's authors, Dr. Jane Little, director of the Adult SCD Clinc at UH Seidman Cancer Center, had this to say about their findings: "We are very enthusiastic about music therapy, and its promise for improving the lives of people who have sickle cell disease.  "Our results support the value that music therapists contribute to our patients' overall pain management and experience of care." 

    Tweet us @XickleRBC to let us know how music therapy has helped you or a warrior you know.


  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. 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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  4. 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.


  5. How Sickle Cell Gene Mutation was Recently Traced to One Shared Ancestor

    March 13, 2018 by Andrea

    mutation


    We've known for decades that sickle cell disease stems from a gene mutation that helped protect people from contracting malaria. And now, as of last Thursday (March 8), when this study was published in the American Journal of Human Genetics, we've learned that every single person who has ever lived with sickle cell disease or sickle cell trait is descended from one Saharan child born 7,300 years ago.

    As the New York Times reports, this mutation was only advantageous -- that is, until that child's descendants began to settle in different parts of the African continent, and generations later, unknowingly, met and started families with other descendants of Child Zero, sometimes passing down two copies of the mutation, ultimately creating what we know as sickle cell disease. Sickle cell currently affects about 100,000 people in the U.S. and about 300,000 worldwide.

    "Dr. Shriner and Dr. Rotini [leaders of this recent study] analyze the genomes of nearly 3,000 people to reconstruct the genetic history of the disease," the New York Times reports. The hope is that this new discovery will lead to better patient care and better overall understanding of sickle cell itself.

    Read the original article in its entirety here.

     

    (*Photo by Ed Uthman [CC BY 2.0] via Wikimedia Commons)

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  6. Case Study May Give Parents New Option for Ensuring Children Aren’t Born With Sickle Cell

    January 29, 2018 by Andrea
    case study

    Photo for illustrative purposes only



    There's been a push among sickle cell advocates to #KnowYourGenotype. The thought behind this movement is that if everyone has their blood tested before marrying and having children, there can be a significant reduction in sickle cell births, ultimately leading to an eventual eradication of the disease itself.

    While this is good in theory, human emotions can make things complicated. What if two people who are in love discover that they both carry the trait, for example? The inner conflict and turmoil that must create (and has created over decades), we're sure, is unbearable.

    But what if there was another way -- a better way?

    On January 18, the medical journal JBRA Assisted Reproduction published a recent case study on how in vitro fertilization, embryo selection, and cord blood could be that better option. In this case, a South American couple -- both carriers of sickle cell trait -- went through six cycles of in vitro to produce 53 embryos. As reported by Sickle Cell Anemia News, of the 53 embryos, 15 had normal hemoglobin, 12 had sickle cell, 20 had sickle cell trait, and 6 were undetermined. 

    If the couple was only looking to ensure having a baby without sickle cell or without the trait, they'd have 15 embryos to choose from; however, these parents already had a daughter who was born a sickle cell warrior, so they wanted an embryo to create a baby who's cord blood stem cells were a match for their daughter, and therefore, could be used in treating her. The couple ultimately had a healthy baby boy, and the cord blood transplantation into his sister was successful, presenting a potential new option for parents while reducing the amount of sickle cell births and treating current sickle cell warriors at the same time.

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  7. Reflecting on Sickle Cell Research, News, and More: A Year in Review

    January 2, 2018 by Andrea

    reflection

    Like many of you, we're ringing in the new year with a little bit of reflection. We reached many milestones in 2017, including entering the second phase of our clinical trial and being recognized as a "promising new drug for the treatment of sickle cell disease." 

    Plus, we published more than 50 new posts about sickle cell news, research, and more. As part of our period of reflection, we decided to comb through all of those posts from the past year to find the 12 most popular ones. So, in case you missed any (or you'd like to read them again) here they are: a collection of articles that received the most eyes and the most engagement throughout the 1-7. 

    1. New Video Game Aims to Infuse Fun with Sickle Cell Awareness 

    2. How Sickle Cell Research May Lead to a Cure for HIV-1 

    3. How One Sickle Cell Warrior Turned Her Health Status Into a Thriving Business 

    4. Gene Therapy Reverses French Teen’s Sickle Cell 

    5. How to Turn the March for Science’s Actions into Sickle Cell Activism 

    6. Sickle Cell and Menstruation: How to Raise Awareness and Advocate for Better Care 

    7. 4 Tips That Make Managing Sickle Cell at College Simpler Than You Thought 

    8. 3 Ways to Cope with Sickle Cell Pain — That Aren’t Meditation 

    9. T-Boz Releases New Memoir Just in Time for Sickle Cell Awareness Month 

    10. 12-Year-Old Writes Comic Book to Help Kids Battle Their Illnesses 

    11. The McCourty Twins are Coming Through with a New SCD Fundraiser 

    12. The Black Panther Party and Its Dedication to Sickle Cell Awareness 

    While 2017 definitely had its challenges, just taking even a few minutes of reflection to consider all that you've accomplished in the past 12 months can leave you with so much more hope, determination, and motivation. Use that newfound positivity to push through this new year and make 2018 even better than the last.

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  8. Deer Blood Research May Lead to Advancements in Sickle Cell Treatment

    December 26, 2017 by Andrea

    deer blood


    Some fascinating news broke last week: After 170 years of wondering why the red blood cells of deer sickle, scientists have finally discovered what causes the distortion. 

    As reported in Science magazine, researchers compared deer blood in species that do have sickling properties with the deer blood in species that don't and found that an amino acid change was the catalyst. "In the sicklers, one amino acid had switched from glutamic acid to valine," the Science article states. "The same amino acid swap happens in the faulty form of hemoglobin that triggers sickle cell anemia, but at a different location in the molecule." 

    While they've solved one mystery, though, a few still remain -- why is that cell sickling in deer blood doesn't cause the animals to fall ill like it does in humans? Why do red blood cells in deer sickle at high oxygen levels, rather than at low oxygen levels as it happens in people? And how exactly does the amino acid switch help deer and humans resist malaria? Further study will hopefully reveal all the answers and lead to improved treatment of sickle cell. 

    Be sure to get all of the details on this riveting research by reading the full article here.

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  9. 3 Benefits of Being Thankful All Year Long

    November 20, 2017 by Andrea
    Photo: CreateHer Stock

    Photo: CreateHer Stock



    It's Thanksgiving Week here in the United States, and in the midst of prepping to travel, welcome arriving family and friends, and/or cook up an epic holiday feast, gratitude is foremost on everyone's mind. But gratefulness should be a priority year-round. In fact, science even says that it can improve your overall health -- something that's especially important for sickle cell warriors. Here are three benefits of maintaining that spirit of thankfulness all 365 days.

    1) It can reduce anxiety and depression.
    When crises occur, it can be difficult to keep a positive outlook. And while finding something to be thankful for during times of pain, worry, and sadness can seem almost impossible, working hard at doing just that has been proven to actually rewire your brain, leading to more feelings of happiness in general.

    2) It can improve your immune system.
    As a sickle cell warrior, keeping your immune system as healthy as possible is paramount to avoiding illnesses, such as the flu, as complications requiring hospitalization can arise much more easily than in people without SCD. One recent study by researchers at the University of Utah and the University of Kentucky found that people who consider themselves to be optimistic actually had more disease-fighting cells in their bodies.

    3) It can make you more resilient.
    Being thankful helps lessen cortisol levels caused by stress and also helps people become better able to surmount traumatic obstacles in their lives. According to Forbes, a 2006 study revealed that "Vietnam War Veterans with higher levels of gratitude experienced lower rates of Post-Traumatic Stress Disorder."

    To discover even more ways expressing gratitude is good for you, check out this infographic created by CBS News.

    How do you plan to practice thankfulness this holiday season and beyond? Tell us in the comments below!

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  10. “The Dope Science Show” Talks Xickle for Sickle Cell Awareness Month

    September 25, 2017 by Andrea
    Dope Science Show

    Photo: CreateHer Stock



    A few months ago, Dr. Eric Coles -- co-owner of Xickle RBC-Plus -- sat down with Stephany of "The Dope Science Show" to discuss sickle cell disease, how natural ingredients can be used to lessen SCD crises, and what advice he'd give to aspiring scientists, among other things. And just in time for Sickle Cell Awareness Month, Dr. Coles's episode has dropped.

    Currently, Dr. Coles is working with his business partner Dr. Robert Swift developing a new drug for the treatment of sickle cell. SCD-101, as it's called, is the drug formulation of the current supplement (Xickle RBC-Plus) and has completed Phase l clinical trials, published those results (Click to read the article in the Journal Blood) and is currently in Phase ll clinical trials right now. The science of this development isn't all that new, though; it's actually based on Niprisan/Nicosan -- the drug used to treat sickle cell in Nigeria that, unfortunately, is no longer on the market.

    "That's kinda the sad part of the story," Dr. Coles says. Apparently, back in 2003, the Nigerian version of the FDA approved the drug in Nigeria and licensed Niprisan to a U.S.-based pharmaceutical development company for the purpose of producing the drug as an FDA-approved one. But, before the U.S. company could develop anything, it went bankrupt. Around the same time, in Nigeria, the bank foreclosed on the facilities that produced Niprisan. All those with sickle cell that were taking Niprisan could not longer get their treatment. 

    Soon after, Dr. Swift, decided to take on the development of Niprisan himself. He did so alone from 2009 to 2011, when Dr. Coles joined him. Together, they have improved the formulation with more anti-sickling activity and have commenced clinical trials. So far the results have been excellent.

    Listen to the entire podcast below to learn even more:

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