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  1. 5 Must-Read Motivational Books for Every Sickle Cell Warrior

    September 22, 2016 by Andrea
    Photo: stocksnap.io

    Photo: stocksnap.io

    While strength is characteristic of many sickle cell warriors, no one can be strong every single day. So, whenever you fell yourself drifting into worry, self-doubt, or depression during a crisis or just a bad day, reach for one of these reads: 

    1) The Four Agreements by Don Miguel Ruiz
    This book shares the "source of self-limiting beliefs that rob us of joy and create needless suffering. Based on ancient Toltec wisdom, The Four Agreements offer a powerful code of conduct that can rapidly transform our lives to a new experience of freedom, true happiness, and love." -amazon.com 

    2) The Gifts of Imperfection by Brené Brown
    "In The Gifts of Imperfection, Brené Brown, a leading expert on shame, authenticity, and belonging, shares ten guideposts on the power of wholehearted living—a way of engaging with the world from a place of worthiness." -amazon.com

    3) Peace in the Storm: Meditations on Chronic Pain and Illness by Maureen Pratt
    "A devotional for anyone who lives with the spiritually challenging presence of chronic pain and illness. This book contains short chapters that include a Scripture verse, meditation, and prayer focused on one aspect of struggling with health issues, each of which is meant to encourage, inspire, and strengthen the reader's inner spirit and make his or her walk with God more joy- and peace-filled." -maureenpratt.com

    4) 365 Days of Positive Thinking by Jenny Kellett
    Chock-full of quotes, such as "Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time" and "Nothing is impossible; the word itself says, 'I'm Possible!', this book provides empowering bites of motivation for each day of the year.

    5) Chicken Soup for the Unsinkable Soul by Jack Canfield, Mark Victor Hansen, and Heather McNamara
    "Sure to become a favorite of readers who love Chicken Soup for its stories of overcoming life's obstacles, challenges, heartbreaks and pain, this book emphasizes triumph in the face of overwhelming odds." -chickensoup.com

  2. 13 Books Every Sickle Cell Warrior Should Read

    November 8, 2014 by Andrea


    There’s nothing better than the satisfaction of reading a really good book — especially when it's a book with a voice that understands your struggle and fills you with inspiration, hope, and understanding. 

    Here's a list of 13 books — in no particular order — that every sickle cell warrior should read. 

    1. Now You See Me, Now You Don't 

    2. I Only Cry at Night 

    3. Hope and Destiny: The Patient and Parent's Guide to Sickle Cell Disease and Sickle Cell Trait 

    4. Menace In My Blood: My Affliction With Sickle-Cell Anemia 

    5. In the Blood: Sickle Cell Anemia and the Politics of Race (Critical Histories) 

    6. Meet Camden: Living with Sickle Cell Anemia 

    7. Dying in the City of the Blues: Sickle Cell Anemia and the Politics of Race and Health 

    8. Medikidz Explain Sickle Cell Disease: What's Up with Casey? 

    9. Little Tree: A Story for Children with Serious Medical Problems 

    10. The Brave Souls Club 

    11. My Daughter's Journey with Sickle Cell Disease 

    12. Lenabell: A Doctor's Memoir of a Remarkable Woman's Eighty Year Battle With Sickle Cell Disease 

    13. My Brother Has Sickle Cell 

    Did we miss any of your must-reads? Add them in the comments below! 

  3. 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

  4. 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.

  5. 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.

  6. 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.

  7. 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.

  8. 12-Year-Old Writes Comic Book to Help Kids Battle Their Illnesses

    October 9, 2017 by Andrea

    Photo: thesickler.com

    Comic books about superheroes have always been classics, and with the resurgence of the genre via movies and series, such as "Luke Cage", "Jessica Jones", "Black Lightning", and "Daredevil", just to name a few, these stories are more popular than ever.

    Drawing on this popularity, 12-year-old Parker Todd, a sickle cell warrior himself, decided to write a comic book in which a boy named Chase Parker transforms into his superhero alter ego to help kids fight their illnesses. Parker's first book, "The Adventures of the Sickler" is inspired by his own struggles with SCD.

    "I was thinking, 'What do I wanna do to help uplift other kids and myself?" he said in a recent interview with NYC's PIX 11 channel news. "I sorta thought, maybe, a superhero type of vibe because, you know, who doesn't like a good superhero story?"

    Want to add this book to your collection? Visit thesickler.com to order your copy for $15. Bonus: A portion of the proceeds from the book's sales will be donated to the Sickle Cell Thallassemia Patient Network.

    Hear Parker's entire story by watching the full interview below:

  9. T-Boz Does Not Hold Back on Her Call for Us All to Get Involved in Sickle Cell Awareness

    July 3, 2017 by Andrea
    Photo: Instagram/@therealtboz

    Photo: Instagram/@therealtboz

    After Prodigy's passing late last month, celebrities and fans alike flocked to social media to express condolences and shock at the news. Many people even inquired as to what sickle cell was and how someone got it -- another clear sign that this disease does not even come close to getting the attention and research support it needs.

    One celeb, though -- T-Boz of the R&B girl group TLC -- sent off a series of tweets that were perhaps the most impactful, as they came from a place of true understanding and passion for awareness. A sickle cell warrior herself, T-Boz has had a few near-death experiences, which she shares in her upcoming book, "A Sick Life" (out in September, which is also Sickle Cell Awareness Month). Never one to keep quiet on the issue, T-Boz hosts annual fundraisers for sickle cell, speaks on it regularly in interviews, and writes about it in her books and poetry.

    In the following tweets, she calls out the SCDAA for not doing enough and calls on the Black Lives Matter movement to do more in regard to sickle cell awareness. Read what she has to say, heed the call, and get involved in any way you can.

  10. Sickle Cell Warrior and Member of Mobb Deep, Prodigy Passes Away at 42

    June 27, 2017 by Andrea
    Photo: Instagram/@prodigymobbdeep

    Photo: Instagram/@prodigymobbdeep

    Last Tuesday (June 20), eerily enough just one day after World Sickle Cell Day, Prodigy of the famous hip-hop duo Mobb Deep made his transition. Only 42 years old, the rapper was on tour in Las Vegas where he died from complications of sickle cell disease -- a condition he was always very open about.

    In fact, in his 2011 memoir, My Infamous Life, Prodigy detailed his struggles with the disease, at one point discussing a close call he had while on tour in India. "Ten hours into the eighteen-hour flight, my sickle cell pain crept up. By the time we landed in Bombay, I was in bad shape," he begins. "Slowly I felt the sickle cells accumulating and spreading throughout my body. Then I felt something I never felt before -- the sickle cells moving to my heart. It was time to put in an emergency call to the Most High."

    His memoir wasn't the only place Prodigy used to relay his battle with SCD. He also communicated what he was going through and how he was coping through his lyrics and via interviews. Here are a few things he had to say on living life and overcoming hardships:

    "Until my death, my goal's to stay alive. Survival of the fit, only the strong survive." -Survival of the Fittest, Mobb Deep

    "My life before hip-hop was just pain. Sickle cell was my life before hip-hop. I ain't really have no life -- that was it. I'm growing up, that's all I know, just being in a ... hospital all the time. And then music ... The aggressiveness of it attracted me to hip-hop because I was angry inside. I was an angry kid because of sickle cell ... [hip-hop] helped me get my aggression out." - interview with NPR, 2013

    "I was born with pain. My moms and my pops passed it down to me ... I'm talkin' 'bout permanent, physical suffering. You know nothin' about that, you just complain 'cause you stressed. My pain's in the flesh, and through the years that pain became my friend; sedated with morphine as a little kid. I built a tolerance for drugs ... Now hospital emergency treat me like a fiend ... Beggin' God for help ... Naw, you can never feel my pain." - You Can Never Feel My Pain, Prodigy 

    "I love to promote good health and certain things that you're supposed to be doin' with your diet because I want other people with sickle cell to learn how I live ... Hopefully, I can inspire other people with sickle cell to get their stuff together and get out there and do what they gotta do. Don't let it hold you back." - DJ Booth interview, 2008

    Have a favorite lyric or quote from Prodigy/Mobb Deep that's not listed here? Share it in the comments below.

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