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  1. The Links, Inc. Donates $1 Million to St. Jude for Sickle Cell Research

    May 8, 2018 by Andrea
    St. Jude

    Photo by St. Jude Children's Research Hospital

    Most of us know St. Jude Children's Research Hospital as the place that treats pediatric cancer patients at no charge to the family. But did you know the doctors at this hospital also treat kids with sickle cell (and other life-threatening diseases)? And they do it all through the donations they receive -- their latest from The Links Foundation, Inc. (the philanthropic segment of The Links, Inc., a nonprofit organization of professional Black women) of $1 million is designated specifically for sickle cell research. 

    In a press release published on May 3, St. Jude reports that the donation called the Legacy Grant will go toward ensuring the progresson of three SCD programs: studies on how sickle cell affects cognitive abilities, a counseling initiative for parents of babies with sickle cell in Nigeria, and the development of a mobile app to help warriors practice self-care and disease literacy. "Advancing the care, and ultimately, the cure for sickle cell disease has been at the heart of St. Jude since the hospital opened," Dr. James R. Downing, president and CEO of the hospital said in the press release. 

    This grant is somewhat of a full-circle moment for the research hospital, as the very first grant it ever received back in 1958 -- four years before the hospital was even built -- was also for sickle cell disease research. "St. Jude is an organization whose mission and vision align with ours ... and we greatly admire its deep and longstanding commitment to children with life-threatening diseases like sickle cell disease," Dr. Glenda Newell-Harris, president of The Links stated in the same release.

    Find out more details here.

  2. There’s a New Stem Cell Method That Has Cured Patients of Sickle Cell

    May 1, 2018 by Andrea
    stem cell

    Photo by Piron Guillaume on Unsplash (Illustrative purposes only)

    Seven adult sickle cell warriors have officially been cured of the disease. And yes, it was done through the use of stem cells -- just not in the way you may think. 

    Typically, in order for a person to undergo a stem cell transplant, their donor must be a family member who has HLA markers (cell proteins that help regulate the immune system) that are a full match, which can be difficult to find. But the doctors at the University of Illinois Hospital in Chicago have developed a new method that allows for donors to be a half-match. "We modified the transplant protocol by increasing the dose of [chemotherapy] radiation used before the transplant, and by infusing growth factor-mobilized peripheral blood stem cells instead of bone marrow cells," Dr. Damiano Rondelli -- hematology professor, director of the Blood and Marrow Transplant program, and one of the authors of this study -- told UIC Today, the university's publication. 

    The original article goes on to say that while the transplants were successful (seven out of eight of them, to be exact), there are still quite  few obstacles preventing patients with sickle cell from receiving this cure, such as medical insurance denial and high chance of stem cell rejection due to frequent blood transfusions. 

    Still, this is an exciting start toward developing a more widespread cure in the future. You can read about all the details in the full article here.

  3. 5 Ways to Unwind When Your Only Have a Few Minutes

    April 24, 2018 by Andrea


    You already know how much we believe in self-care and relaxation. It helps reduce stress, which in turn can lessen the occurrence of a crisis and the complications that come with it. But what if you don't have an entire day -- or even an hour -- to devote to such calming techniques? No worries, we're bringing you a whole host of ways to unwind, even if you only have a few minutes.

    1. Treat yourself to a scalp massage.
    When you don't have the time, or the budget, for a full-body massage, grab a scalp massager, and spend five to ten minutes stimulating all those nerve endings on your head. Your brain will receive messages of relaxation and enjoyment, and your well-being will thank you.

    2. Get your cuddles.
    Whether it's with your S.O., your child, or your pet, cuddling is a great way to calm any stressors going on in your life. In fact, cuddling releases oxytocin into your body and can even help lower your blood pressure, making you feel nice and relaxed.

    3. Laugh out loud.
    As the old adage goes, "Laughter is the best medicine." It's more than just an empty platitude, too. Laughing can actually relax your muscles, release endorphins, dismiss feelings of anxiety, and more. So, use your few minutes to watch an amusing meme or video, listen to your favorite funny radio host, or call up a friend who always makes you chuckle.

    4. Bask in the sun.
    Escape the dimness and stress-inducing environment of your workplace by stepping outside for a little while. Just feeling the warmth and light of the sun on your skin can boost your mood for the better.

    5. Listen to some music.
    There's music to match any mood you're feeling or trying to feel, and when your brain hears a certain style of song, it reacts accordingly. For example, a fast one with sharp lyrics can help you address and move on from anger; an upbeat tune can send messages of happiness to your brain; and smooth jazz tracks can elicit feelings of calmness.

  4. Taking Sickle Cell Awareness to the Airwaves

    April 18, 2018 by Andrea


    Along with blog posts, social media chats, and rockin' our red in support, traditional media such as television and radio can help sickle cell awareness efforts reach an even wider audience, an audience that may not know the truths about SCD. Here are three examples of sickle cell awareness hitting the airwaves in the past week: 

    1. BET's "The Rundown with Robin Thede"
    On Thursday, April 12, this BET late night show aired a segment called "Pain and Prejudice." Interspersing light humor (it's a comedy show, after all) with facts, the segment addressed how doctors often don't take the pain Black patients are experiencing seriously, and they used the experience of sickle cell warrior Cassandra Trimnell (who's also the executive director of Sickle Cell 101) to explain this bias. "I don't know any other patient populations that have as much of a struggle getting pain medication as sickle cell patients, and a lot of people suspect it's because it's labeled as a 'Black disease,'" she said on the show. Watch the segment below: 

    2. Britain's Got Talent
    Over the weekend, the B-Positive choir auditioned for Britan's Got Talent, giving them a huge platform to discuss sickle cell disease. The choir, which received yeses across the board, is the official choir of NHS Blood and Transplant and is made up of members who have sickle cell themselves or have family members or friends who do. "The NHS Blood and Transplant wants to get the message [out that] everybody give blood. That's what we're about," the choir director told BGT's judges. Watch their performance below: 

    3. The Tom Joyner Morning Show
    Today, April 18, TJMS tackled sickle cell and the importance of African-American bone marrow donors for it's #GetWellWednesday segment. Specifically, they spoke with 8-year-old Darian Smith and his family. Darian needs a bone marrow transplant to live a healthier life. Read more about his story here.

  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. 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.

  7. 4 Symptoms of Sickle Cell Crisis Everyone Should Know About

    March 26, 2018 by Andrea

    crisis post

    Even though celebrities such as T-Boz and the late Prodigy have spoken freely about living with sickle cell disease, the awareness they create is always short-lived, while other rare diseases go on to have ice bucket challenges and make major headlines for multiple years. A reason for this is likely because our society sees sickle cell as a "Black-only disease" (the majority of warriors in the U.S. are African American), and as with other aspects in our country that may mostly affect Black people, SCD isn't made a priority. 

    These Black lives matter, too. About one in every 365 African-American babies are born with sickle cell, and as of now, this lifelong disease has no cure. There are treatments and crisis interventions available, though, that are improving year after year. 

    You may not be a warrior yourself. You may not even have a warrior in your family. But, if you or your child has a friend over and that friend has SCD, or you're a teacher with a student who has SCD, or any other similar circumstance, it's important that you have a working knowledge of sickle cell and the ability to quickly recognize the symptoms of a crisis, so you can get the necessary help should a crisis set in on your watch. 

    1) Pain 

    Most likely, the pain will occur in the arms, legs, belly, chest, or lower back, but it's possible to have pain anywhere on the body. 

    2) Fatigue

    Since the red blood cells are misshapen, they can stick together and block the path for other red blood cells to carry oxygen throughout the body. This means the body has to work extra hard to get oxygen where it's needed, which can leave the warrior feeling weak and exhausted. 

    3) Difficulty Breathing

    The same oxygen reduction that leads to fatigue can also make breathing difficult. This is also known as acute chest syndrome, which causes coughing, chest pain, and shortness of breath. 

    4) Fever 

    Photo by Ph0705 (Own work) [CC BY-SA 4.0 (https://creativecommons.org/licenses/by-sa/4.0)], via Wikimedia Commons

    Photo by Ph0705 (Own work) [CC BY-SA 4.0 (https://creativecommons.org/licenses/by-sa/4.0)], via Wikimedia Commons

    If a fever is present, this may also suggest that the crisis was triggered by an illness. It's important to take the person to the doctor immediately so proper care can be given to avoid potential complications from infection.

  8. 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.

  9. 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)

  10. 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:


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