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  1. 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 

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    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

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    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

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    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.

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

    March 19, 2018 by Andrea

    self-care

    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.

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

    March 13, 2018 by Andrea

    mutation


    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)

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

    March 5, 2018 by Andrea
    spilled milk

    Instagram/spilledmilkdoc



    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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