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

    June 12, 2018 by Andrea


    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.

  2. This UK-Based Org. Uses Stories to Promote Successful Change in Healthcare

    February 19, 2018 by Andrea

    everyone has a story

    "Everybody has a story. And there's something to be learned from every experience." - Oprah 

    One of the most effective ways of connecting with others can be through storytelling. It allows us to envision ourselves in similar circumstances as the people in the stories and better empathize with what those people may be going through, learn from their experiences, and/or spur us to get involved in something we may never have considered before. In fact, Oprah Winfrey has built an empire by sharing her story, as well as those of countless others, to inspire, motivate, unite, and initiate progress. 

    Incorporating a similar premise, the Cambridge, England-based organization Patient Voices, which has been at work since 2003, seeks to record and share stories of patients living with various conditions for the purpose of helping improve the quality of healthcare and gather valuable insights for research reasons. 

    One segment of stories they produce called "Terrific Teens" is part of a larger project that also involves workshops for the teen patients and their families -- and of the two conditions featured in this collection (so far), one compiles the stories of teen sickle cell warriors. Told in short videos, each one ranging in length from one-and-a-half minutes to three-and-a-half minutes, each teens' story gives a glimpse into their lives, their experiences with crises, and how they cope and continue to push through daily to lives their best lives despite challenges. 

    To listen to the individual stories of these teen warriors, their parents, and their siblings, click here

  3. Boston School District Finally Recognizes Sickle Cell Disease as Impeding a Student’s Education

    February 13, 2018 by Andrea


    Last week, the Boston Globe reported that the Boston, Massachusetts public school system has officially decided to recognize sickle cell disease as a disability that can affect a child's education. For a condition that has been known to exist for more than 100 years, this is long overdue.

    Because of the occurrence of crises, hospitalizations, and other complications that can arise with sickle cell warriors, students are often forced to miss classes -- upwards of 20-30 days, according to a 2006 study. And as recently as 2016, the journal article "School Performance and Disease Interference in Adolescents with Sickle Cell Disease" confirmed that "missing school can have [a] significant impact on educational attainment in adolescents with SCD; attainment is measured through grade retention, special education rates, and letter grades." The article goes on to say, "Difficulties associated with missed instruction are further complicated by subject matter that builds on previous knowledge such as mathematics and foreign languages. Additionally, adolescents may miss exams and standardized tests."

    For these very reasons, the Center for Law and Education, along with the Massachusetts Law Reform Institute, filed a complaint against the Boston school system back in 2015, the Globe reports. This lead to a series of adjustments in school policy and ultimately to the official recognition as stated earlier. According to the Globe, the school system has also created a Sickle Cell Advisory Group.

    Every school district in this country can look to Boston as an example of how to reform its own policies addressing students with disabilities, so all students do indeed receive a "free and appropriate" education. Does your local school district recognize SCD as a disability that can inhibit a student's education? Tweet us @XickleRBC and let us know!

  4. Your Favorite Children’s Author Just Came Out with a Book About Sickle Cell

    November 6, 2017 by Andrea
    Little George

    Photo: roalddahl.com

    Children love stories, and stories are one of the best ways to teach kids things they need to know in a way that's relatable, fun, and interesting to them. One of those things is sickle cell. Fortunately, more books are starting to be published for kids to help them understand what sickle cell is from a young age -- whether they need to know what's going on inside their own bodies, or you'd like them to have an understanding about important health concerns that affect other kids (and adults) like them. If you haven't already, definitely be sure to check out "The Adventures of The Sickler" and "My Friend Jen," and then add our latest discovery to your collection, too -- one that comes from the organization of the late author of "Charlie and the Chocolate Factory" and "Matilda," Roald Dahl.

    Funded by a trio of foundations -- Roald Dahl's Marvellous Children's Charity, The Burdett Trust for Nursing, and Twin Visions charity -- the new (free!) booklet, "Little George and the Dragon" tells the story of Little George, a sickle cell warrior, who helps his neighbors deal with a painfully annoying dragon who dropped out of the sky and onto their street by teaching them about how he deals with sickle cell, which can also be painful and annoying.

    Besides the book, which you can read for free here, there's also an accompanying app of the same name. "An informational game about sickle cell anaemia," this app also takes you through the story of Little George learning how to cope with his own SCD.

  5. How One Medical Team is Working Prevent Strokes in Kids with Sickle Cell

    October 24, 2017 by Andrea

    Photo: StockSnap.io

    With a 24 percent chance of having a stroke before the age of 45 and a 67 percent chance of recurrence, it's easy to see why a team of doctors at the Medical University of South Carolina (MUSC) have made stroke prevention in sickle cell warriors their priority.

    Just how are they able to prevent a possible stroke from happening, though? Turns out, there's a test called a transcranial Doppler exam, which has actually been in existence at least since the early 2000s. Problem is, according to Dr. Julie Kanter, a hematologist and researcher at MUSC, only about 30 percent of children with sickle cell in the U.S. are being tested.

    "When I see kids -- or adults -- not getting the care they're supposed to, that everyone should be giving them, it's very bothersome," Kanter said in a recent interview with the University's media relations team. "Doing the TCD is like a colon cancer screen. If you do a colonoscopy, you can prevent colon cancer by taking the necessary steps following that colonoscopy. If we do a TCD and it's abnormal, you can start transfusion therapy and prevent stroke."

    Along with two other MUSC researchers, Dr. Kanter will lead a study to determine what's really preventing some kids from getting the screening they need. From there, the team will analyze their results to find ways to ensure that screening rates rise.

    For more information on this study, read the complete article here.

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

    April 24, 2017 by Andrea
    march for science

    Poster design: marchforscience.com


    The March for Science -- which saw protesters all over the world stand up against the Trump administration's "alternative facts"-driven outlook on the discipline -- took place on Earth Day (Saturday, April 22, 2017). And while the majority of the march's focus seemed to center on climate change, the Flint water crisis, and wildlife protection, scientific research of all kinds is championed by the marchers, supporters, and activists.

    That includes research and advancements for sickle cell disease.

    This new week post-march is one of continued action and provides the perfect opportunity to further awareness of SCD, starting with today (Monday, April 24), in which the theme is "Science Discovers." The march's website provides various ideas on how to participate in this first day of action: promote science outreach, plan a science game night, and get others involved. Building upon the March for Science's suggestions, we've got a few thoughts on how you can tailor your first day of action -- and the rest of the week's -- to be sickle cell-specific:

    1. Plan an informal teach-in (or series of teach-ins) at a local school, church, or community organization to be held in the near future. Partner with a nearby chapter of the SCDAA or other similar group to bring in experts and speakers.

    2. Suggest that your book club choose a sickle cell-themed book for your next selection, and come to the meeting ready to discuss what you've all learned, and brainstorm ways you can support the community.

    3. Create your own SCD-themed card game or board game with family and friends. Then, host a game night to actually play your newest masterpiece. It's a fun way to educate yourself and others you know about sickle cell. Check out this list of science-related games for inspiration on developing your own.

    As you work on those ideas and begin the planning process, keep the other days of action in mind, too, and implement more activities and programs so that your year is full of activism and awareness.

  7. World Cord Blood Day Seeks to Raise Awareness for Sickle Cell and Other Life-Threatening Diseases

    April 10, 2017 by Andrea

    cord blood post

    A new awareness event that will benefit sickle cell disease, among others, is set for November 15, 2017. This event, the first-annual World Cord Blood Day, seeks to educate the public about how stem cells taken from blood in the umbilical cord is a non-controversial method of retrieving and using stem cells to treat dozens of diseases, including SCD.

    According to a recent press release from Save the Cord Foundation, the event's organizers, more than 35,000 cord blood transplants have been done all over the world since 1988 and have treated 80-plus life-threatening diseases -- sickle cell being one of them. Research relating to stem cell transplants of this kind show that the transplants work best when the cells come from a relative (although research relating to donor stem cells is pushing along and has worked in some cases). The thing is, saving cord blood is literally a once-in-a-lifetime opportunity, as it must be done at the time of birth. World Cord Blood Day will help make people aware of how important it can be to save and bank this resource. 

    "We are truly excited about this opportunity to expand cord blood education worldwide while providing a platform for discussion focused exclusively on this valuable medical resource," Charis Ober, Executive Director of Save the Cord Foundation, said in the press release.

    So far, partners for this premier event include the Cord Blood Association, Be the Match, the World Marrow Donor Association, the American Association of Blood Banks, and the Foundation for the Accreditation of Cellular Therapy. Participation in the very first World Cord Blood Day is easy: You can sign up to learn about events near you, attend the free virtual conference, and/or join in the discussion on social media using the hashtag #WCBD17.

    Another movement to help raise awareness about sickle cell treatment and other diseases? That's a definite win.

  8. Essential Oils: 5 Picks Every Sickle Cell Warrior Should Add to Their Self-Care Routine

    March 13, 2017 by Andrea
    Photo: Honou via Flickr/CC BY 2.0

    Photo: Honou via Flickr/CC BY 2.0

    Self-care is important for everyone and especially important for sickle cell warriors, as stress can lead to painful episodes. For millenia, essential oils have been used to combat stress and infuse surroundings with peace and calm. Here are a few to include in your self-care routine:

    1) Mimosa
    This essential oil is known to improve overall well-being, as it has a relaxing effect on both the mind and the body. Place a few drops in your bath water, and indulge in the calming aroma of its sweet, floral scent.

    2) Lemon Verbena
    Not only can this essential oil calm stress and anxiety, it can also help ease pain in the muscles and joints. Add a bit to your favorite massage oil and benefit from less muscle tension and less stress in general.

    3) Rosewood
    Described as having a spicy and sweet floral aroma, this essential oil is known for its ability to help you center yourself, which can, in turn, help calm your overall emotions and stress.

    4) Cypress
    The perfect post-workday remedy, this essential oil helps lift moods and create feelings of positivity. Add a few drops to a warm or cold compress, and place it on your head or anywhere else you're feeling tension.

    5) Vanilla
    Vanilla doesn't have to be relegated to baking only. Its essential oil can also fight off negative feelings and ease stress and anxiety. Place a few drops into a decorative diffuser or oil burner, and enjoy the sweet aroma of relaxation.

    When choosing your essential oils, be sure to select ones that are pure, rather than synthetic -- synthetic oils smell just as good, but do not have any therapeutic benefits. Neal's Yard Remedies, the publishers of Essential Oils, recommends the following methods for choosing quality ones: Check the company's credentials and ensure the botanical name also appears on the label.

    Enjoy this new addition to your self-care regimen and let us know how it works for you in the comments below!

    *Source: Essential Oils: All-natural remedies and recipes for your mind, body, and home

  9. Gene Therapy Reverses French Teen’s Sickle Cell

    March 7, 2017 by Andrea
    Photo: OpenStax College [CC BY 3.0], via Wikimedia Commons

    Photo: OpenStax College [CC BY 3.0], via Wikimedia Commons

    No doubt your Twitter feed has been flooded with the news that recently broke about a French teenager whose sickle cell disease has been reversed due to gene therapy. Read on to find out how it all happened.

    Until about 15 months ago, the then-13-year-old French boy (whose name has not yet been released) had to return to the hospital monthly for blood transfusions to treat his sickle cell. And as the BBC reports, this boy's internal damage was so bad, he'd already had his hips replaced and his spleen removed.

    Then, doctors had the idea to try an experimental treatment on the boy, in which they would remove his bone marrow and genetically alter it, theoretically correcting the gene mistake that causes sickle cell. "By using a virus to insert genes for the correct form of [hemoglobin protein] into the bone marrow ... researchers have been able to restore the elasticity to the patient's blood," explains Science Alert. Afterwards, the bone marrow was returned to the patient's body to see if, in fact, the gene therapy would prompt the marrow to generate normal red blood cells.

    It worked, and so far, so good.

    Since the teen's operation, he's shown no signs of SCD whatsoever, and as a result, his hospital visits and medications have ceased. While far from a cure, though -- since this procedure has only been done, albeit successfully, on one person -- it does show how gene therapy can potentially be the key needed to unlock a true cure.

    Even if this is the case, the BBC notes another potential barrier -- the fact that the majority of sickle cell warriors live in African countries, and therefore do not have easy access to expensive gene therapy procedures, such as this. So, besides conducting more trials on many more patients, researchers will also need to discover a way to reduce costs, so that if a cure is indeed discovered, it can actually be used where it's needed most, to help as many millions of people as possible.

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

    January 16, 2017 by Andrea
    Photo: Play for Change

    Photo: Play for Change

    At Chicago's DePaul University, there's a team of video game designers seeking to tackle more than the typical platform game. Led by Doris Carmen Rusch (founder and creative director of Play for Change), this crew - which is comprised of undergrads, grad students, and alumni -- has been developing a game called "Blood Myth" for the specific purpose of increasing sickle cell awareness.

    Reminiscent of "Dungeons & Dragons" with its folklore aspect, "Blood Myth" is being built in partnership with DePaul's athletic department. The game takes players into an imaginary world in which they must surmount obstacles on their quest toward the top of a magical mountain to discover the Blood Myth's truths.

    "'Blood Myth' aims to create empathy for people with sickle cell disease and remind people with sickle cell that however they may feel, they are not 'cursed," the game's website explains. "Play 4 Change aims to use 'Blood Myth' to increase adherence to crisis-prevention methods, self-care, and promotion of a life-affirming, hopeful perspective to those with sickle cell."

    Just yesterday (Jan. 8), Play for Change hosted a playtest for the new game, and according to recent Twitter updates, players enjoyed the storyline and the gameplay.

    For more updates on the game and when it will be released, follow Doris Carmen Rusch on Twitter and follow Play for Change on Facebook.

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