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  1. Your Help is Needed to Ensure the Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act of 2018 is Signed Into Law

    July 31, 2018 by Andrea

    committee


    Every year, the Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act must be renewed, and on July 25, 2018, the U.S. Senate Committee on Health, Education, Labor, and Pensions (HELP) approved bill S. 2465 to go to the full Senate for consideration and approval. 

    Sponsored by Reps. Cory Booker and Tim Scott, this companion bill to HR 2410 will allow the Department of Health and Human Services to study SCD (and other genetic blood disorders) and gain a more accurate picture of how many people are truly affected. According to a press release from the Senate HELP committee, we know about 100,000 Americans are sickle cell warriors. However, there may actually be more -- there's not yet enough data to know. In addition to collecting more of this data, the bill will also encourage the development and implementation of more treatments to help patients with these disorders live healthier lives. 

    Before this bill can become law, though, it must be passed by the Senate, the house, and then, signed into law by the president. To help ensure all these milestones are successful, it's imperative to contact your senators repeatedly. Click here to find out who your reps are, and then, call them, e-mail them, tweet them -- let them know you will hold them accountable.

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  2. 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.


  3. Opioids, Sickle Cell, and the Latest Win on the Issue

    July 10, 2018 by Andrea

    opioids

    Instead of improving over the years, the stigma associated with sickle cell warriors and pain medications has only gotten worse -- especially with the onset of this administration's focus on what they term the "opioid epidemic." Warriors are often dismissed as addicts and told their pain can't possibly be as bad as they say it is. 

    Recently, though, one Virginia man scored a win for the thousands of people living with sickle cell in his state. Yesterday (July 8, 2018), the Richmond Free Press reported that on June 15, Virginia's governor, Ralph S. Northam, approved a regulation change allowing doctors to prescribe sickle cell patients higher dosages of opioids without having to provide justification for such prescriptions. This change, which was campaigned for by George H. Carter, a Virginian who lives with SCD and is chief lobbyist for the nonprofit Sickle Cell – Virginia, has been a long time coming. 

    According to the paper, Carter took his fight to the General Assembly and the Virginia Legistlative Black Caucus first, but neither would help him. Finally, he approached the state Board of Medicine, and this past February, they voted 12-6 to add sickle cell to the list of opioid regulation exemptions. 

    "If you haven't experienced the pain, you just cannot imagine what it is like," Carter told the Free Press. 

    Read the entire article here.

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  4. 5 Summer Reads for When It’s Too Hot to Actually be at the Beach

    July 3, 2018 by Andrea

    Even when the weather makes it too unbearable -- and too much of a crisis risk -- to bask in a chair seaside, you can still enjoy all the latest beach reads from the comfort of your air conditioning. Put your meditation app on calming beach waves, and settle in with a mocktail and one of these page-turners: 

    1) Children of Blood and Bone by Tomi Adeyemi, Barnes & Noble ($12.19)
    If you love all things Octavia Butler, you've got to grab your copy of Tomi Adeyemi's debut novel. It follows the character Zélie Adebola, as she seeks to avenge the death of her mother and restore magic to her homeland.

    Photo courtesy of publisher

    Photo courtesy of publisher


    2) Then She Was Gone by Lisa Jewell, Barnes & Noble ($19.45)
    This one goes out to all the mystery/thriller lovers out there. A tale of a mother's search for her long-missing daughter, this plot-twisty novel is a must-have for your summer reads list.

    Photo courtesy of publisher

    Photo courtesy of publisher


    3) An American Marriage by Tayari Jones, Books-A-Million ($17.24)
    Of course, no summer reads list is quite complete without at least one Oprah's Book Club pick. And in this one, two newlyweds have their lives changed in an instant when one of them is sent to prison for a crime he didn't commit. He returns home five years later, but can he and his wife really just pick up where they left off?

    Photo courtesy of publisher

    Photo courtesy of publisher


    4) Well, That Escalated Quickly by Franchesca Ramsey, Target ($22.90)
    A self-proclaimed "accidental activist," Franchesca uses humor to discuss everything from race to gender to social justice to identity and everything in between.

    Photo courtesy of publisher

    Photo courtesy of publisher


    5) The Woman In Cabin 10 by Ruth Ware, Barnes & Noble ($9.89)
    Lo thought a dream assignment aboard a luxury cruise ship would be just what she needed to level up at the travel magazine where she works. But when a woman on board goes missing -- and all that surrounds her is water -- Lo's dream quickly turns into a nightmare.

    Photo courtesy of publisher

    Photo courtesy of publisher

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  5. How to Raise Sickle Cell Awareness 365 by Starting a Book Club

    June 18, 2018 by Andrea

    book club

    Tomorrow is World Sickle Cell Day, but the only way to truly make an impact on SCD awareness is to make the efforts ongoing. We've shared a lot of ideas over the past few years about how to do just that, and in celebration of WSCD 2018, we're comin' at you with another one: Start your own book club. 

    But not just any book club. Fill your reading list with sickle cell-related fiction and nonfiction and your membership roster with warriors and non warriors. We've even compiled a few selection options to get you started. Once you've settled on those preliminaries, it's time to solicit input from founding members to decide how many people you'd like to have in your club and how often you all should meet. Will you gather monthly? Quarterly? Bi-monthly? Who will host each meeting and where? Will you rotate members' houses or meet in a public place? How will you determine what books to read next? 

    To kick things off, the book club's founder can select the first book; or, they can send a survey with a narrowed down list of choices to current members, and read the winning pick. Then, when it's time for the first meeting, that session's host/hostess can lead the group through spirited discussion, keeping the following topics in mind: 

    1) Overall thoughts on the book
    2) How effective the book was conveying its message
    3) Whether anyone learned anything new
    4) Themes/motifs, etc. 

    Picking up a book club journal will help with discussion, as well as provide a fun record of all the books you and your group read, making it easy for everyone to share recommendations with friends and family. 

    For more information about book clubs, check out the website for National Reading Group Month. The actual month is October, but this resource is available 365.

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  6. The FDA Wants to Hear from You. Here’s How to Make That Happen.

    June 12, 2018 by Andrea

    savannah-walters-504059

    Last month, the Food and Drug Administration (FDA) announced it would be holding a public meeting all about chronic pain, in hopes of learning, directly from people living with chronic pain, more about what patients go through and how treatment is given. As the date draws nearer -- the event will be held on July 9, 2018 from 10 a.m. to 4 p.m. at the FDA's White Oak Campus in Silver Spring, Maryland -- we wanted to encourage sickle cell warriors to make their voices heard, whether in person or via letter. 

    It's no secret that sickle cell warriors, a large number of whom are of African descent, face stigma and prejudices when it comes to securing the medications needed for their severe pain. Many times, doctors will make assumptions that the person seeking help is an addict and refuse to believe their pain is as intense as they say. Chart notes reflecting this can also potentially affect a person's future treatment, as well. While there have been studies published, articles written, and even TV shows dedicated to calling out such ill treatment of this specific group of people, the prejudices continue. The best way to help push the medical community toward necessary change as a whole is to speak out -- and never stop until that change is made. 

    According to the announcement, the "FDA is particularly interested in hearing from patients who experience chronic pain that is managed with analgesic medications such as opioids, acetaminophen, nonsteroidal anti-inflammatory drugs (NSAIDs), antidepressents; other medications; and non-pharmacologic interventions or therapies." If you can't make it to next month's meeting in person, the FDA wil be accepting written comments (e-mail or regular mail) about your experiences with chronic pain through September 10, 2018. You can find details on sending your submission here.

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  7. World Sickle Cell Day 2018 Awareness Campaigns You Can Start Now

    June 6, 2018 by Andrea

    world sickle cell day 2018

    June 19 is World Sickle Cell Day, but you don't have to wait until then to show your support and help raise awareness. Here are a few examples of what others are already doing leading up to World Sickle Cell Day 2018 to inspire you. 

    1. SHARE CREATIVE FUNDRAISING IDEAS
    It's a good idea to stick to one major fundraiser each year, but you can host mini ones once per quarter, so as not to wear out the donors you seek. Just in time for the approach of World Sickle Cell Day 2018, the Sickle Cell Society recently shared this Fundraising A-Z chart developed by LocalGiving.

     

    2. INVOLVE THE KIDS
    Kids are naturally curious and inventive, so use that as you begin teaching children who may not know what SCD is. Then, ask them to come up with fun ways to help spread the word and get their friends in on the action, too. A group of seventh graders recently came up with the idea to wear red tape. 

     

    3. JOIN THE COLOR CAMPAIGN
    Some have begun a campaign to encourage people to wear red and black for the entire month of June, rather than just one day, to help raise awareness of sickle cell. Join them by wearing your red and black, sharing your selfies, and urging others to do the same. 

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  8. 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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  9. 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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  10. 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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