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  1. 3 Ways to Cope with Sickle Cell Pain — That Aren’t Meditation

    July 25, 2017 by Andrea
    Photo: Photo by Brandon Morgan on Unsplash

    Photo: Photo by Brandon Morgan on Unsplash

    Don't get us wrong -- we're all about meditation and self-hypnosis as a coping method for those less-severe moments of sickle cell pain. They're backed by research and work really well for some people. The key word there, though, is "some."

    To be honest, many others simply just don't like meditation and can't get into it. And if they don't like it, they won't practice it, and therefore, won't reap any of the benefits. Sound like you? #NoShame. Try these alternative coping styles and stick with the one(s) that work best for you.

    1) Turn up that playlist. Listening to your favorite jams not only helps to lower stress -- which can intensify feelings of pain -- but it can also help boost your mood in general. "As music can absorb our attention, it acts as a distraction at the same time it helps to explore our emotions," explains this Psych Central article.

    2) Choose your support squad. Sharing your experiences with others who truly understand what you're going through will help you feel validated, give you a safe space to release any pent-up frustrations, and provide you with even more coping methods -- tested by other Warriors.

    3) Try a Swedish massage. Massages loosen muscles, increase oxygen levels in the blood, improve overall circulation, and reduce stress and anxiety, just to name a few. And the Swedish modality is a less intense form, which makes it a promising alternative for people living with SCD. As Sickle Cell Warriors recommends, though, it's best to seek this type of treatment when pain is less than a level 5, as triggering movement of already-sickled cells may worsen the pain.

    And as always, take care to prevent a crisis before it occurs by staying hydrated, avoiding extreme temperatures, getting plenty of sleep, and doing light exercise. You can also try adding Xickle RBC-Plus to your regular routine to aid in reducing the incidence of cell sickling.

    What other ways do you use to cope with sickle cell pain? Share them in the comments below!

  2. 4 Tips That Make Managing Sickle Cell at College Simpler Than You Thought

    June 13, 2017 by Andrea


    Going away to college can already be stressful enough -- new place, new people, new classes -- but managing your sickle cell while you're there doesn't have to be. With the tips below, living with SCD away from home won't be as complicated as you may have thought:

    Under the Americans with Disabilities Act, colleges and universities are required to provide "reasonable accommodations" -- any modification or change to the typical rules and policies and/or to an academic environment -- that will allow you to be successful while you're there. For example, you may be able to have more excused absences, have access to thermostat controls in your dorm room, or be permitted to make up an exam or a lab that you may have missed due to a hospital stay.

    The campus health center will probably be the most convenient place, but they may not be equipped to handle sickle cell patients. So before arriving at school, do your research on doctors and hospitals near your school. You can even ask your current physician for  any recommendations.

    Don't wait until you're feeling super overwhelmed. Carve out time for study breaks, moments of mindfulness, and light exercise every day. This can help you keep stress -- and stress-induced crises -- at bay.

    Along with all of the above, continue to do what you've always done to stay pain- and illness-free as much as possible. Drink plenty of fluids, eat nutritious and balanced meals, wash your hands, avoid extreme temperatures, and get plenty of sleep.

    Are you a sickle cell warrior who's gone away to college? Have any other tips to share? Add them in the comments below!

  3. This Model Proves That Sickle Cell Doesn’t Have to Run Your Life

    February 15, 2017 by Andrea
    Photo: Instagram|bethint

    Photo: Instagram|bethint

    Extreme cold, rapid temperature change, and illness are just a sampling of triggers that can launch an all-out sickle cell crisis. But Virginia native Bethany Barber, who is now living in NYC, has to battle those conditions on the regular for her career. Bethany is a model.

    Recently, The Virginian-Pilot shadowed Bethany as she walked in the freezing New York temps to and from Fashion Week model castings. According to the paper, Bethany fell in love with the fashion industry during her multiple hospital stays, in which she would devour magazines and emulate the faces and poses of the models she saw in the pages.

    She's come a long way in a short couple of years. Since her initial modeling gig, a local fashion show in her hometown, Bethany has landed a guest spot on "Law & Order: SVU" as well as modeling jobs with Rocawear, Mizani, and L'Oreal, just to name a few. Besides all of that, she also earned her bachelor's degree in nursing.

    "When she started college, she would leave from doing 12-hour clinicals, jump on the train to go to casting calls in New York, and come back to work," her mentor Kevin Lawrence said in an interview with The Virginian-Pilot. "It didn't always go well. There were umpteen trips until she got it right. She never complained, never became complacent."

    Bethany is definitely an inspiration, and we salute her perseverance and success this Black History Month and beyond.

    Read the entire article about Bethany's journey here.

  4. There’s a New Sickle Cell Disease Stem Cell Library in the Works

    January 23, 2017 by Andrea
    Photo: Vegasjon (Own work) [CC BY-SA 4.0] via Wikimedia Commons

    Photo: Vegasjon (Own work) [CC BY-SA 4.0] via Wikimedia Commons

    Long before 1910 (the official year of sickle cell discovery in the United States) -- about 5,000 years, in fact -- SCD existed on the African continent. But even after almost 110 years of official recognition, people all over the world continue to die of the disease.

    A new effort to fix this is now happening at Boston Medical Center. There, a team of scientists is planning to develop a stem cell research library -- the largest of its kind -- that will hold blood samples of sickle cell warriors of all ethnic backgrounds, in hopes of making it easier to share advancements in sickle cell treatment and improve upon them.

    The stems cells used are called induced pluripotent stem cells (or iPSCs), which, according to Science Daily, "are cells that can renew indefinitely as undifferentiated cells and later can be directed to grow into any type of tissue or organ." Think of these cells as if they are a master key to the body. Just as master keys can unlock all doors to buildings, iPSCs can "unlock" production codes for all cells and body tissues, enabling the body to heal itself. Since these stem cells are self-renewing and can reproduce in such a way, they will also help develop disease models for testing. These capabilities will help researchers better understand how sickle cell disease works, so that in can be more effectively treated, and possibly cured.

    For more information on this new development, read Science Daily's full article here.

  5. 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.

  6. How Warriors Can Prevent Catching the Flu This Season

    November 8, 2016 by Andrea
    Photo: itsv|Flickr via  CC BY-NC-ND 2.0

    Photo: itsv|Flickr via CC BY-NC-ND 2.0

    As we start to really settle in to fall and winter, we'll begin to see a rise in occurrences of the flu, which brings up an important question: Should you get the flu shot? Short answer -- yes. Here's why:

    As a sickle cell warrior, you're already at a higher risk for developing complications from the flu if you catch it, so preventing that from happening is a must. It is especially paramount when it comes to children with sickle cell. According to a study published by Pediatrics in 2011, the risk of hospitalization in kids with SCD is 56 times greater than that of children without SCD. Because of this, the CDC recommends that everyone living with sickle cell receive the flu vaccine annually, beginning after six months of age. Something important to note this year is that, while the FluMist exists, the CDC is only recommending injectable shots, as they've been shown more effective.

    Furthermore, the Pediatrics study went on to prove that vaccinating sickle cell warriors against the flu does not increase their chances of going into a crisis and being hospitalized for that. Therefore, the flu shot is safe to get. Per their results, they "did not find an association of influenza vaccination and hospitalization for sickle cell crises."

    Typically, it will take about two weeks for the flu shot to build up enough antibodies in your system to provide protection against infection. In the meantime, you can practice other preventative measures, such as hand washing, rest, probiotic intake, and more. Actively working to prevent contracting the flu (and other contagious illnesses) will help you avoid any extra hospital stays, as well as contribute to an overall healthier life.

  7. 5 Alcohol-Free Holiday Beverages Every Sickle Cell Warrior Can Enjoy

    October 17, 2016 by Andrea

    It's hard to believe, but we're already half way through October -- and the holidays are right around the corner. This means lots of family, fun, friends -- and drinks. But having a few adult bevvies, can potentially send a warrior into a painful crisis.

    Why? Alcohol is a diuretic, which leads to more frequent urination, which causes the body to lose a lot of fluids, which, in turn, causes dehydration. And dehydration is a definite trigger for a crisis. "Alcohol [also] suppresses the secretion of anti-diuretic hormone (ADH), which means that your body is unable to regulate how much water you are losing ..." reports Sickle Cell Warriors, Inc.

    But, there's no need to miss out on all the merriment -- we've rounded up a list of alcohol-free holiday mocktail recipes that everyone can enjoy this season!

    1. Ginger-Cinnamon Apple Cider
    To create this tasty treat, all you'll need are a few ingredients that you probably already have in your kitchen: sugar, water, ground cinnamon and cinnamon sticks, ginger root, and apple cider. Easy peasy!










    Sparkling Cranberry Punch
    The color itself is oh-so-festive, but the added fizz of sparkling water tops everything off. Simply mix together cranberry juice, frozen pink lemonade, and sparkling water, and voila! 











    Frost Bite Mocktail
    Embrace the wintry weather with a refreshing drink that combines the flavors of lime juice, pineapple juice, white grape juice, mint leaves, blueberries, and lemon-lime soda.

     Frost-Bite-Mocktail retry2

    (From The Little Kitchen)

    4. Frozen Peppermint Hot Chocolate
    Perfect for cozying up around the fire, this peppermint-infused goodness is super easy to make. Just throw the hot chocolate mix, milk, and ice into a blender. Then, blend until smooth, and top with whipped cream and crushed peppermint candy canes.


    (From Pocket Change Gourmet)





     5. Pumpkin Pie Steamer
    If you're hosting Thanksgiving this year -- or you're thinking of something to contribute to another hosts' meal -- consider this recipe for the pumpkin pie steamer. After all, anything boasting fall's favorite flavor is sure to be a hit. Simply microwave the pumpkin puree and water together in a mug; then, stir in pumpkin pie spice, vanilla extract, and the sweetener of your choice.


    (From OatmealAfterSpinning.com)





















  8. Why a Warrior’s Mental Health is Just as Important as Physical Health

    October 12, 2016 by Andrea
    Photo: CreateHER Stock

    Photo: CreateHER Stock

    Patients with sickle cell combat more than just physical complications -- anxiety and depression can also prove difficult. Besides the pain that comes with a sickle cell crisis, if you throw an added layer of anxiety into the mix, that can lead to even more hurt. "Pain can be a common symptom ... of an anxiety disorder," states the Anxiety and Depression Association of America. "And a co-occuring chronic pain disease can make functioning even more difficult for someone with an anxiety disorder."

    It's the same with depression. According to the Mayo Clinic, "Depression can cause pain -- and pain can cause depression. Sometimes pain and depression create a vicious cycle in which pain worsens symptoms of depression, and then the resulting depression worsens feelings of pain." And suffering from all three at once? Just imagine. Oftentimes, though, the stigma associated with anxiety and depression hinder healing the most.

    Here's how you can help yourself -- or a warrior in your life -- manage mental health successfully.

    1) Break the Stigma.
    Recognize the importance of strong mental health -- and do not allow yourself to feel shamed for seeking help. On the contrary, enlisting the assistance of a mental health professional shows that you are proactive and take your entire well-being seriously. Anxiety and depression can be treated, allowing you to life a happier, healthier life.

    2) Meditate.
    This can be as simple as purposeful deep breathing exercises that last a few minutes; or, you can set aside some time each day to sit in silence, reflect, and relax. There are several free meditation apps that can help get you started.

    3) Work Out.
    Of course, we don't recommend anything too strenuous, but taking up something like yoga, Pilates, or tai chi can help promote relaxation and actually lessen stress and anxiety.

    Are you a sickle cell warrior who has dealt with anxiety and depression? How have you  managed a health mental and physical lifestyle? Tell us in the comments below!

  9. 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

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