Xickle® RBC-Plus™ is available now. WHY WAIT. Live a Healthier Life!
Connect With Us


  1. How Sickle Cell Inspired This Writer’s Debut Novel

    April 16, 2018 by Andrea

    Author Photo by Eniola Alakija

    A rare disease in the U.S., sickle cell affects about 100,000 total people. In Nigeria, however, the occurrence of SCD isn't as uncommon; in fact, more than 40 million Nigerians carry sickle cell trait and more than 150,000 babies are born with sickle cell disease each year, making Nigeria home to the largest number of sickle cell warriors in the world.

    One of those 40 million, Ayobami Adebayo, is the 30-year-old author of the acclaimed novel "Stay With Me," of which the writing was heavily influenced by her own carrier status and the state of SCD in her home country. A candidate to receive the Bailey's Prize for Women's Fiction, the 9mobile Prize for Literature, and the Wellcome Book Prize (for fiction or nonfiction works that deal with themes of medicine, health, and illness), among others, Adebayo's "Stay With Me" tackles just how much sickle cell disease can affect the families involved.

    In a recent interview with The Guardian, Adebayo says the loss of two of her own friends as teens to sickle cell also inspired her debut work. "I just couldn't stop thinking about what it meant for the mother," she told the paper. "Not just to experience that kind of loss, but to somehow get up the next day."

    Read the full interview here, and if you're interested in reading the novel, you can pick up a copy here.

  2. 6 Instagram Accounts Every Sickle Cell Warrior Should Follow for Overall Wellness Inspo

    April 2, 2018 by Andrea

    Photo: CreateHer Stock

    Welcome to April, also known as National Minority Health Month -- "a time to learn more about the health status of racial and ethnic minority populations in the U.S.," as stated by the Department of Health and Human Services. To kick things off, we've rounded up a few awesome Instagram profiles of Black girls who are wellness leaders -- whether their focus is healthy eating, fitness, mental and emotional well-being, or a combination of them all. Get ready for a mini follow spree and endless inspiration!

    1) Haile Thomas (@hailethomas)

    Let’s talk ✨MEAL PREP✨: to be honest, I’ve never really been a “meal prepper” ??‍♀️ I usually feel restricted by too much organization and always want to eat something that isn’t already in my fridge ? With that said, I challenged myself to experience a week as a prepper. — BUT instead of pre-making/prepping specific meals, I prepped different components of a meal in order to leave more room for creativity and versatility ???—On Sunday I prepared for the week by cooking different grains, root veg, beans/legumes, greens, + special condiments (like pickled onions & roasted curry cashews). ? And tbh, with all of these amazing ingredients at my disposal, life has been sooo much easier!! So far, none of my meals have taken more than 10 minutes to make...and if you have a busy schedule like me, this is a #blessing ???? *Unexpected Bonus Perk:* Meal prepping in this manner has pushed me outside of my normal flavor & ingredient combos as well! ((shook)) This bowl is all kinds of crazy-combo magic!! ?✨ ft. Crispy Turmeric Tempeh + Sorghum + Smoky Chili Maple Butternut Squash + Arugula & Avocado this bowl made for such a unique and satisfying late lunch ?⚡️? I’m really looking forward to improving on my meal prep skillz as the week goes on ...do y’all have any tips for effective&delicious meal prep??

    A post shared by Haile (@hailethomas) on

    Only 17 years old, Haile already has nearly 10 years of health activism under her belt. Her feed is not only full of appetizing vegan recipes, but also delivers motivation for all areas of your life.

    2) Happy Org. (@thehappyorg)

    Founded by Haile Thomas, this nonprofit is specifically geared toward helping kids and teens learn how to eat healthier through nutrition and culinary classes.

    3) Outdoor Afro HQ (@outdoorafro)

    Black people don't go camping, you say? Squash stereotypes and find new ways of embracing nature and trying different fitness activities through these photos, where you'll find people who look like you hiking, camping, canoing, and more.

    4) Jeanette Jenkins (@msjeanettejenkins)

    Trainer to the stars, Jeanette is also ready to bless your TL with motivational quotes, delicious healthy food plans, quick and easy exercise videos, and more.

    5) Golden Flourish (@golden.flourish)

    Self-care and inner wellness can be found in the little things, too. Follow Golden Flourish for examples of things you can do each day.

    6) Jessamyn Stanley (@mynameisjessamyn)

    Yoga instructor and body positivity advocate (and yes, you've also seen her on those U by Kotex commercials), Jessamyn proves that healthy bodies can come in all shapes and sizes. In need of some serious motivation? Jessamyn doesn't disappoint.

  3. Self-Care Must-Haves for the Sickle Cell Warrior

    March 19, 2018 by Andrea


    As a sickle cell warrior (or the friend, family, or caretaker of one), sometimes it can feel like you're always in fight mode -- fighting a crisis, fighting stress so it doesn't become a crisis, fighting for your life. Battling it out all the time is exhausting, and that's why self-care is so important. Recharge your self-care practice with these must-haves: 

    1) TheraBox
    Founded by an actual therapist, this subscription box delivers "fresh, new ingredients of happiness straight to your door every month." Examples of goodies in past boxes include journals, stress-relieving facial masks, tea, bath salts, mugs, and more! 

    2) Noise-Cancelling Headphones
    Whether you need to unwind with a proper Netflix binge-watching session, embrace complete focus during meditation with your favorite app, or simply take a nap in true silence, try a pair of noise-cancelling headphones, so all those background noises can fade into the, well, background. 

    3) Coloring Books
    Adult coloring books exploded on the scene as a way to cope with stress and anxiety a few years ago. Of course, children's coloring books are always available for them, as well. "Coloring is a highly creative and meditative activity that can have powerful therapeutic anti-stress and relaxation benefits. It activates the brain's right hemisphere, reducing stress, and promoting a relaxed, meditative state," the book's creator Kathy Weller writes in the overview of this particular one. 

    4) The Little Book of Mindfulness
    Boasting that it only takes 10 minutes a day to live with "less stress" and "more peace", this (non coloring) book, written by Dr. Patrizia Collard, is packed with quick exercises to help you manage anxiety and live well. 

    5) Body Lotion Candle
    For a double dose of self-care, burn this French Fig and Amber candle for its aromatherapy property, and then, use the melting candle itself as a moisturizer. Yep, as the candle burns, it liquefies into a lotion. 

    6) Self-Care Index: A Pocket Guide for Remembering the Things You Like to Do
    With pages that read, "Unplug for 1 hour. Right now.", "Build a blanket fort", "Put on a record", and even "Google 'Corgi butt'", this book is sure to take your mind off any pain or stress you may be feeling for awhile.

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

    March 13, 2018 by Andrea


    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)

  5. Best Friends Capture the Real Face of Sickle Cell with New Documentary, “Spilled Milk”

    March 5, 2018 by Andrea
    spilled milk


    We always hear platitudes about how you don't have to be rich or famous or a certain age to make an impact on people's lives -- and Jaqai Mickelsen and Omar Beach are proving that to be true with their new documentary "Spilled Milk."

    Best friends since the early '90s when they met in high school, the duo didn't realize how Jaqai's love of video cameras would come into play in their lives down the road, using it to document, and ultimately share, Omar's sickle cell journey. About six years and more than 40 hours of footage later, their 84-minute documentary, which can be viewed free of charge here, "takes an intimate look at Omar's everyday life and explores the harsh realities of Sickle Cell [sic], the effects of which extend beyond the significant physical impact of the disease," states their website.

    It's one thing to have knowledge of the disease and how it affects the people who live with it and a totally different thing to actually see the effects on a real person in real time. From the opening scene, viewers are hit with just how real the struggle can be for sickle cell warriors. We see Jaqai and his wife sitting in their car as Jaqai relays to her that Omar's mom has just informed him that she found Omar unresponsive and bleeding through his mouth; an ambulance is on the way.

    Interspersed with footage from their teen years; Omar's hospital stays; and interviews with sickle cell doctors, psychologists, and the best friends' own friends and family, Jaqai and Omar's "Spilled Milk" really gives a full picture of Omar, the person, to share his complete story while raising awareness for SCD at the same time.

    Watch the full film here, and donate to support the documentary:


  6. Rare Disease Day is Here. Find an Event Near You.

    February 28, 2018 by Andrea

    Social Media Profile Badge Rare Disease Day (2)

    The most common of the rare diseases, sickle cell affects about 100,000 Americans. Even so, there's still a lot to be done on the research front to fully understand it, how to treat it more effectively, and potentially, how to find a cure. Your participation in Rare Disease Day can help with all of these things.

    Today, February 28, 2018, 80 countries will unite to recognize Rare Disease Day for the 11th year in a row, with hundreds of events taking place across the world. This year's theme is research, and the plan is to get as many patients, families, friends, and other allies as possible to actively "call on policy makers, researchers, companies, and healthcare professionals to increasingly and more effectively involve patients in rare disease research."

    Take a look at the events below to find one near you. (Can't attend in person? Show your support on social media using these ideas.)

    1) Running on Air's Third Annual Rare Disease Day Virtual Race
    2) Harmony 4 Hope's Rock Rare Disease: A Global Online Music Campaign
    3) Georgia Rare Disease Day Seminar/Meet-and-Greet with Legislators
    4) Broad Institute's Third Annual Beyond the Diagnosis Art Exhibit
    5) Eight Annual Sanford Rare Disease Symposium
    6) Rare Disease Week on Capitol Hill
    7) Swing Fore the Kids Rare Disease Awareness Event

    For a full list of events happening all over the globe, click here.

  7. 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

  8. 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!

  9. How Jordin Sparks and Family are Turning Grief into Action After Sickle Cell Loss

    February 5, 2018 by Andrea
    Jordin Sparks step-sister Bryanna

    Photo: GoFundMe

    While it is more typical in this day and age for sickle cell warriors to live well into adulthood -- some into their 90s even! -- complications can still arise that don't allow for that to happen. Just last week, singer and American Idol alum Jordin Sparks first took to Instagram asking for prayers for her step-sister. "Please keep my little sister, Bryanna, in your prayers," she wrote. "She's suffering from complications from sickle cell and is in the ICU fighting for her life." Later, she confirmed that her sister had passed.

    To celebrate Bryanna's life, the family has created a GoFundMe, so in lieu of sending flowers, people can donate to help raise awareness of SCD, provide assistance with medial bills of other warriors, and establish a "Bry's Corner" in hospitals around the country, so patients can have a "fun space" to spend time in during hospital stays.

    The fact that some warriors still don't get a chance to live to adulthood confirms what we've already known even further -- much more research and resources are needed to discover a cure and to help extend the lives of all warriors until a cure is found.

    According to WHAS11, an ABC affiliate out of Louisville, Kentucky, doctors at the city's Norton Children's Hospital are working to do just that. They've created a transition program to help teens and young adults be much more prepared for aging out of pediatrics and into adult care. "We try to practice with them, speaking up, asking questions, making [their] own appointments," clinical social worker Spencer Moorman tells the news station.

    Currently, the adults and teens in this new program attend monthly support meetings to help them stay on top of their health as they move through the process, ultimately becoming solely responsible for their care.

    Programs like this one are a good start, but we still have a long way to go.

  10. 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.

Sign Up For Xickle's Newsletter!

Get the latest news, health tips and special offers!

Subscribe To Our Newsletter

Subscribe To Our Newsletter

Join our mailing list to receive the latest news and updates from our team.

You have Successfully Subscribed!