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  1. Your Help is Needed to Ensure the Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act of 2018 is Signed Into Law

    July 31, 2018 by Andrea

    committee


    Every year, the Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act must be renewed, and on July 25, 2018, the U.S. Senate Committee on Health, Education, Labor, and Pensions (HELP) approved bill S. 2465 to go to the full Senate for consideration and approval. 

    Sponsored by Reps. Cory Booker and Tim Scott, this companion bill to HR 2410 will allow the Department of Health and Human Services to study SCD (and other genetic blood disorders) and gain a more accurate picture of how many people are truly affected. According to a press release from the Senate HELP committee, we know about 100,000 Americans are sickle cell warriors. However, there may actually be more -- there's not yet enough data to know. In addition to collecting more of this data, the bill will also encourage the development and implementation of more treatments to help patients with these disorders live healthier lives. 

    Before this bill can become law, though, it must be passed by the Senate, the house, and then, signed into law by the president. To help ensure all these milestones are successful, it's imperative to contact your senators repeatedly. Click here to find out who your reps are, and then, call them, e-mail them, tweet them -- let them know you will hold them accountable.

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  2. Opioids, Sickle Cell, and the Latest Win on the Issue

    July 10, 2018 by Andrea

    opioids

    Instead of improving over the years, the stigma associated with sickle cell warriors and pain medications has only gotten worse -- especially with the onset of this administration's focus on what they term the "opioid epidemic." Warriors are often dismissed as addicts and told their pain can't possibly be as bad as they say it is. 

    Recently, though, one Virginia man scored a win for the thousands of people living with sickle cell in his state. Yesterday (July 8, 2018), the Richmond Free Press reported that on June 15, Virginia's governor, Ralph S. Northam, approved a regulation change allowing doctors to prescribe sickle cell patients higher dosages of opioids without having to provide justification for such prescriptions. This change, which was campaigned for by George H. Carter, a Virginian who lives with SCD and is chief lobbyist for the nonprofit Sickle Cell – Virginia, has been a long time coming. 

    According to the paper, Carter took his fight to the General Assembly and the Virginia Legistlative Black Caucus first, but neither would help him. Finally, he approached the state Board of Medicine, and this past February, they voted 12-6 to add sickle cell to the list of opioid regulation exemptions. 

    "If you haven't experienced the pain, you just cannot imagine what it is like," Carter told the Free Press. 

    Read the entire article here.

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  3. 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 

    addiction-antibiotic-aspirin-860378
    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

    alarm-clock-analogue-bed-271818
    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

    blur-chart-check-up-415779
    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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  4. 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.

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  5. 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.

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  6. How Writing Poetry Can be Therapeutic for Sickle Cell Warriors

    December 19, 2017 by Andrea
    poetry

    Photo: CreateHer Stock



    Sometimes, there are things you want to say that others may not be willing -- or ready -- to hear. Whether that's because they can't handle the emotion of the moment, are too busy, or something else is preventing them from truly being present with you, you'll need to find another outlet for your pain. Writing is one option.

    There's  a reason experts often suggest writing to express feelings -- it can truly be therapeutic. "This is much more than simply trying two write pretty sentences," states an article from Psychology Today. "It is about singling out experiences, events, and people that contributed to one's life. Seeing cause and effect, understanding psychological processes can significantly increase self-understanding." Even better? Your writing doesn't have to come in the form of a long essay or memoir. Short poetry has been a go-to coping strategy for generations of people. 

    A very introspective form of writing, poetry can help people process and come to terms with their life experiences.  According to this article in The Telegraph, "The act of writing about personal experiences has a cathartic effect because it inhibits parts of the brain linked to emotional turmoil and increases activity in the region to do with self-control." The article continues, "The mere action of writing about an emotion [is] a way of calming down the brain and re-establishing mental balance." 

    The next time you need to center yourself, try letting your feelings flow through verse. Here's a little inspiration to get you started (reading poetry is good for you, too!): 

    Sickle Cell Warriors Poetry
    Power Poetry
    Poetry Soup


  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.

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  8. How One Medical Team is Working Prevent Strokes in Kids with Sickle Cell

    October 24, 2017 by Andrea
    TCD

    Photo: StockSnap.io



    With a 24 percent chance of having a stroke before the age of 45 and a 67 percent chance of recurrence, it's easy to see why a team of doctors at the Medical University of South Carolina (MUSC) have made stroke prevention in sickle cell warriors their priority.

    Just how are they able to prevent a possible stroke from happening, though? Turns out, there's a test called a transcranial Doppler exam, which has actually been in existence at least since the early 2000s. Problem is, according to Dr. Julie Kanter, a hematologist and researcher at MUSC, only about 30 percent of children with sickle cell in the U.S. are being tested.

    "When I see kids -- or adults -- not getting the care they're supposed to, that everyone should be giving them, it's very bothersome," Kanter said in a recent interview with the University's media relations team. "Doing the TCD is like a colon cancer screen. If you do a colonoscopy, you can prevent colon cancer by taking the necessary steps following that colonoscopy. If we do a TCD and it's abnormal, you can start transfusion therapy and prevent stroke."

    Along with two other MUSC researchers, Dr. Kanter will lead a study to determine what's really preventing some kids from getting the screening they need. From there, the team will analyze their results to find ways to ensure that screening rates rise.

    For more information on this study, read the complete article here.

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  9. Twitter Praises Health Service for its Swift Response to Racist Tweet About Sickle Cell Warriors

    October 16, 2017 by Andrea
    racist tweet

    Photo: Screenshot via the Bristol Post



    It may be 2017, but we're all well aware that racism has never ceased to exist, not only in the U.S. but also in other parts of the world. In our modern age, bigotry is often spouted on social media where it can be seen by millions yet still disseminated under a veil of relative anonymity.

    One such event recently occurred on the Twitter timeline of NHS Blood and Transplant, a department of the UK's National Health Service. Back in June, the NHS Blood and Transplant Twitter account tweeted, "Black people with sickle cell disease urgently need black donors." And as Twitter trolls are wont to do, one by the name of @ImGrunenWalde seems to have been deliberately searching for tweets about Black people to unleash his hate upon, as his reply ("If we deport all blacks, this will stop being an issue.") to the June tweet came an entire four months later on October 12 -- long after if would have appeared on his regular timeline. 

    Not one to sit idly by and let racist comments go unchallenged, @GiveBloodNHS clapped back with the BEST reply, "OR.. we could just deport you. ✊". As reported by the BBC, a spokesman for NHS also stated, "There is no place for any kind of racism within our online communities."

    Twitter responded with its own kind of applause for the health service's actions:

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  10. T-Boz Releases New Memoir Just in Time for Sickle Cell Awareness Month

    September 19, 2017 by Andrea

    a sick life book cover

    "A Sick Life: TLC 'n Me: Stories from On and Off the Stage", the new memoir from Tionne "T-Boz" Watkins, was released on September 12 -- appropriately, right in the heart of Sickle Cell Awareness Month. More than a year in the making, this book details T-Boz's experiences of coping with sickle cell, while simultaneously making a living as a member of the highest-selling girl group.

    In an exclusive interview with Good Morning America's Robin Roberts, T-Boz revealed the significance of her memoir's title. "It's a strong word, 'a sick life,' 'cause I've had it all," she said. "I was told I would never live past 30; I would be disabled my whole life and never have kids." Obviously, she beat every odd stacked against her and then some: She's now 47 years old, she birthed a child at age 30, and she managed a hectic schedule and traveled the world as a member of TLC. Surmounting those obstacles didn't come without setbacks, however.

    According to People magazine, which landed the rights to publish excerpts of the memoir in their latest issue, T-Boz told them that after giving birth to her daughter Chase, her body began to shut down and she was in a coma for three days. “Often, it’s hard to breathe or walk,” the magazine reports T-Boz wrote in her memoir. “Some days I wake up consumed by pain. It’s like knives stabbing me over and over again in my joints. Chase gave me a reason to keep pushing through.”

    "A Sick Life" is on sale now, and you can even get a signed copy of the book by clicking here.

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