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  1. How Video Games Can Help Ease Acute Pain in Kids with Sickle Cell

    July 19, 2016 by Andrea
    By Thegreyanomaly (Own work) [CC BY-SA 3.0 (http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons

    By Thegreyanomaly (Own work) [CC BY-SA 3.0 (http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons




    There's so much more to video games than tracking and catching Pokemon all around town. In fact, over the past decade or so, video games have also been shown to help reduce pain in children with chronic diseases, such as SCD.

    In 2014, Talal Ali, a Ph.D student of nursing at Wayne State University in Detroit, Michigan, wrote a dissertation called, Using Video Games For Decreasing Pain Caused by Acute Painful Crisis In Adolescents With Sickle Cell Pain. To collect results for this research study, Talal enrolled 30 participants, ranging in age from 12 to 21, to play video games during painful crises and then complete a self assessment of the pain before the games and the pain after the games. The findings? "The use of video games as a distraction modality has proven to show positive and significant results in the treatment of acute pain."

    Used as a type of therapy, the technology of these interactive games provides kids with a distraction from the pain they're experiencing by involving their mind in actively solving a problem, beating a level, etc. However, there is also research that argues that video games are more than just a distraction -- they are an actual treatment for pain. In an interview with Everyday Health, Dr. Sarah Rebstock, a pediatric anesthesiologist at Children’s National Medical Center in Washington, D.C., said, "It's all due to the concept of neuroplasticity ... the notion that experience causes the brain to wire itself in certain ways and that rehabilitative therapy can essentially rewire the brain ... You're increasing range of motion, increasing blood flow, and retraining your body to decrease the pain so it's not as intense."

    Check out even more research on how gaming can help lessen pain:

    Specialists See Tools to Treat Pain in Video Games

    Video Games Help Relieve Pain

    Video Games Help Treat Kids with Chronic Pain

     

     


  2. Recent News Every Sickle Cell Warrior and Supporter Should Read

    July 13, 2016 by Andrea
    Photo: stocksnap.io

    Photo: stocksnap.io



    Independence Day was last week, but for sickle cell warriors, freedom from the pain of chronic disease is still elusive. There have been many times since the initial discovery of SCD when researchers were close to a turning point that could have potentially led to a cure; however, lack of funding and not enough clinical trial participants, among other obstacles, have hindered progress.

    It doesn't have to be that way, though. Here are some of our favorite recent reads that shine a light on sickle cell and how we can all help push past stagnancy and toward advancement:

    1) The Startling Failure to Cure Sickle Cell Disease

    2) How Black Communities Could Better Help Sickle Cell Patients

    3) World Sickle Cell Day: Black Participation in Clinical Trials Impact Search for Cure

    4)  VCU Student Spreads Blood Donation Education to Benefit Sickle Cell Patients

    P.S. Xickle has been conducting its own clinical trial for the past year -- results coming soon, so be sure to check back here regularly!


  3. These Sickle Cell Awareness Posters are Clever, Funny, and Just What the Movement Needs

    July 5, 2016 by Andrea

    Ever wonder what plugs and sockets and video game controllers and consoles have to do with sickle cell awareness? Well, wonder no more because OluwaLatte and crew have used those images -- and more -- in a campaign they created for World Sickle Cell Day.

    Incorporating clever illustrations with the simple question, "Is Your Love Compatible?" these artists have developed a new way of engaging people of all ages and getting them to seriously consider the importance of knowing their genotype. While specifically created for World Sickle Cell Day and for a Nigerian audience (each image states, "Nigeria accounts for the highest number of sickle cell births annually in the world."), it is clear that these images can be used for any SCD awareness campaign around the world.

    Perhaps, you could reach out to OluwaLatte and collaborate on your next sickle cell educational venture. For real, this is the kind of thing we need to see go viral.

    Twitter | @OluwaLatte

    Twitter | @OluwaLatte

     

    Twitter | @OluwaLatte

    Twitter | @OluwaLatte

     

    Twitter | @OluwaLatte

    Twitter | @OluwaLatte

     

    Twitter | @OluwaLatte

    Twitter | @OluwaLatte

     



    Which illustration is your favorite? Tell us in the comments below!


  4. “Still Standing” Documentary and its World Sickle Cell Day Premiere

    June 22, 2016 by Andrea
    Photo: Twitter

    Photo: Twitter



    You may remember that during Black History Month, we wrote a post recognizing a few people who've dedicated their lives to raising awareness for sickle cell disease. One of those people was Toyin Adesola, a native Nigerian and sickle cell warrior. At the time of that first post, her 2005 autobiography, "Still Standing" was being made into a film. And yesterday, appropriately World Sickle Cell Day, the documentary premiered both online and offline.

    An International Christian Film Festival nominee for Best Director, Most Creative, and Official Selection in the documentary category, as well as an Impact Awards Doc U.S. and International Film Festival, Indonesia winner, "Still Standing" tells of the struggles and accomplishments of Toyin, who was diagnosed with SCD when she was 6 years old. "Growing up, I had the regular pains. And those pains are not something you'd wish on your enemy. Sometimes, even morphine does not even hold that pain down," Toyin explains in the doc.

    She shares that she dealt with depression and fear growing up, as well, but also says that she saw herself doing so much more than simply existing, surviving. She knew she wanted to make a difference and credits going back to school and renewing her faith as major turning points in her life. "I'm driven by God ... my faith in God, and that's why I'm still here. Secondly, just the passion to be able to do things, to achieve things. To know that, yes ... I've been able to give my all," she says in the film.

    Watch the full documentary here (it's only 14 minutes and 30 seconds), and let Toyin tell you her story of strength and perseverance.


  5. How One Man Uses Art to Raise Awareness for Sickle Cell Disease

    May 23, 2016 by Andrea
    Photo: Patreon

    Photo: Patreon



    A self-proclaimed PAINter, Hertz Nazaire has been creating artwork depicting his experiences with sickle cell disease for years. One of his current projects? Collecting photos of warriors who've lost their battle, as well as photos of those who are still very much in the fight, so that he can make them into art and put them on display at his next show in September -- Sickle Cell Awareness Month. "I am a warrior [and] I struggle with the pain of sickle cell disease, so some of my art is created for the awareness of that struggle that is shared by many around the world," Nazaire says on his Patreon site

    In order for him to successfully carry out his mission -- for this project and others to come -- he not only needs photographic submissions, but also donations to help fund his work and its distribution. "It is frustrating when you want to give your heart to something, but you are held back by money. This drives a creative person to the point of madness," he writes. "So, this is the action I took as a result of my anger. I started this Patreon to ask for help to find patrons willing to support my voice and help me create my art."

    Maybe you've been looking for a way to help the sickle cell community, but don't feel that you are able to organize a fundraising event or lead an educational session on SCD itself. This could be your opportunity to give back. It's easy to do and Nazaire says that even a couple of bucks a month can help. Simply click here to donate.

    To submit photos for his current project, e-mail them to nazaire@gmail.com.


  6. 12-Year-Old Sickle Cell Warrior Has Her Own Goals of Raising Awareness

    May 2, 2016 by Andrea
    Photo: YouTube/Screenshot

    Photo: YouTube/Screenshot



    Bringing much-needed attention of sickle cell disease to the masses isn't an "adults only" type gig. And 12-year-old Jaida Holley -- AKA Jay Simone the Decade Author -- proves that.

    A super-energetic spirit with three self-published books under her belt already, Jaida's next goal is to write a book about her own experiences living with SCD. In an interview with KWTX in her hometown of Killeen, Texas, Jaida said, "I know a lot of people don't understand [sickle cell] and I really just wanna spread the news ... and let people know that sickle cell is really real and it's painful." According to KWTX, Jaida would also like to start a support group for girls with sickle cell.

    Jaida got her start in writing just two years ago, when she wrote and published her first book -- a book of poems -- for Google's kid-preneur program called "Lemonade Day." Most recently, she got accepted to Duke University's summer studies program , where she hope to learn even more skills to help her achieve her goals. This young warrior is doing big things and we can't wait to see how it all unfolds!


  7. 10 Instas You Should Follow for SCD Awareness and Fundraising Inspo

    March 30, 2016 by Andrea
    Photo: CreateHer Stock

    Photo: CreateHer Stock



    Last year, we published a popular round-up of the Twitter accounts every sickle cell warrior should follow, and now, we're bringing you a similar list of Instagram accounts dedicated to sickle cell awareness and education.

    Inspired by a recent tweet to us asking how people can turn what the McCourty Twins do into national awareness and fundraising, this list is the perfect start for gathering much of the inspiration you'll need to launch your campaigns. Of course, most events do not start nationally right out the gate, but begin on the local or regional level and grow from there. But who knows, maybe you'll end up pitching your newfound ideas to a national association that can help take your concepts to the next level a little bit sooner.

    @sicklecell101
    "Certified sickle cell educators | education + awareness"

    @sicklecellmatters
    "Connecting families, healthcare professionals, private and public entities worldwide to promote awareness and online funding campaigns for SCD."

    @ssscfoundation
    Samira Sanusi Sickle Cell Foundation based in Lagos, Nigeria

    @shawnstestimony
    "You will get awareness all day with us! A pinch of luv and a lil treasure on the side. U wanna learn how 2 advocate like no otha ... come join us!"

    @sicklecell.life
    "Sickle-cell anemia - facts Tips to live your life ... Motivation, Quotes, Treatment, Healthy food/drinks tips"

    @nazhitheebaker
    "12yrs Old Chef. Creator of Nazhi Thee Baker Angel Foundation Non-Profit Organization"

    @scdaa
    "Official Page of the National Sickle Cell Disease Association of America, Inc."

    @sicklecellstories
    "A place you can share your sickle cell experiences."

    @paincrisis
    "Sickle Cell Advocate. Breaking the silence one post at a time."

    @sicklecellfoundationng
    "Sickle Cell Foundation Nigeria. Bringing hope to the African Child." 

    Did we miss any of your favorite sickle cell warriors? Add their Twitter handles in the comments below!


  8. Meet the 12-Year-Old Chef Who Bakes Cakes for Sickle Cell Awareness

    March 21, 2016 by Andrea
    nazhi the baker

    Photo: Twitter



    When she was only 10 years old, sickle cell warrior Nazhi got the idea to try her hand at baking delicious sweets that would also be healthy. She'd recently seen her older sister, also a sickle cell warrior, suffer a massive stroke, which contributed to her passion for creating healthy foods.

    On her website, Nazhi talks about how her first recipe for peanut butter cookies was an immediate hit, spurring her to expand her repertoire of treats to cheesecakes and ultimately to pound cakes. Now 12, Nazhi bakes and sells her pound cakes -- in flavors such as traditional, lemon zest, caramel pecan, and chocolate ganache -- directly from her website.

    But baking is only a small part of her mission. Through her Nazhi Thee Baker Angel Foundation, she uses the funds raised from her cake sales, as well as from generous donors, to help raise awareness of SCD. She also uses the funds to create and deliver care packages she calls "TLC bags packed with tons of goodness" to other children living with sickle cell. Her plans are to eventually have her goodie bags distributed to every city that has pediatric hematology departments.

    Support the amazing efforts of Nazhi by ordering your cake here or by donating to her cause.


  9. 5 Women Pioneers of Sickle Cell Research You Should Know About Now

    March 9, 2016 by Andrea
    Photo: Gratisography

    Photo: Gratisography



    ICYMI, yesterday was International Women's Day -- and the entire month of March is Women's History Month. That's why, this week, we're recognizing five female pioneers of sickle cell research, one for each week of the month.

    1) Angella Ferguson
    A Howard Grad and one of few females at the time to be admitted into medical school, Dr. Ferguson began her career as a pediatrician studying the development of SCD in African-American babies in the 1950s. Through her research, she was able to develop a blood test to diagnose sickle cell in infants. That test became the national standard in 40 states by 2010.

    2) Dr. Helen M. Ranney
    One of the first to delve into the actual genetic makeup of sickle cell, Dr. Ranney also started her research in the 1950s, during which she was able to devise a way for doctors to tell normal hemoglobin apart from abnormal hemoglobin. This method gave way to another procedure she developed to identify adult carriers of the sickle cell gene.

    3) Henrietta Lacks
    You may be familiar with Henrietta, as her entire story was the basis of the Rebecca Skloot's book, "The Immortal Life of Henrietta Lacks." (BTW: If you haven't read it yet, we highly recommend it.) To summarize, Henrietta Lacks was a poor, Black tobacco farmer who died of cervical cancer at the age of 31. During her surgery to implant radiation tubes in early 1951, several months before her death, the doctor removed cancerous cells, as well as healthy cells -- without her permission. Those healthy cells have become known as "immortal" because they are still multiplying rapidly in labs across the country. Not only has research done with these cells led to breakthroughs in sickle cell disease treatments, but also in a variety of other conditions.

    4) Emmanuelle Charpentier and Jennifer Doudna
    This team created a gene-editing method for doctors to add/remove genetic material at will -- similarly to how you might add/remove programs from your computer's control panel. Being able to alter abnormal genes, like the ones that can cause sickle cell disease is important to working toward better treatment and an eventual cure.

    5) Marilyn Hughes Gaston
    As a medical intern at Philadelphia General Hospital in the 1960s, Dr. Gaston became interested in sickle cell disease and went on to specialize in it. Upon completing her internship, she became director of the Sickle Cell Disease Center in Cincinnatti, Ohio and after four years, moved on to the National Institutes of Health. There, she published a study about how long-term treatment with antibiotics can help prevent septic infections in infants with sickle cell. This study also led to government legislation and funding of sickle cell-related programs and education.


  10. How NFL Stars Jason and Devin McCourty “Tackle Sickle Cell”

    February 29, 2016 by Andrea

     

    In celebration of World Rare Disease Day, we're highlighting the contributions of the McCourty Twins: NFL stars who have dedicated themselves to the sickle cell cause.

    For the fourth straight year, Jason and Devin McCourty partnered with Embrace Kids Foundation to host the annual Tackle Sickle Cell event on Saturday, February 20. Inspired by an aunt and uncle who live with SCD and their late father who carried the trait, Jason and Devin have committed themselves to helping raise awareness and funds for sickle cell warriors. 

    A two-fold event, the twins hosted a blood drive that Saturday morning and a casino-themed fundraiser that night. Their goal for the blood drive, which has seen an increase in donations every year, is to make people aware of the importance of having a diversified blood supply. As Jason McCourty told New Brunswick Today, “The biggest thing with us getting behind this blood drive, is trying to get a more diverse attendance... getting more minorities out giving blood. I think it’s huge and it helps a lot." Why is a diversified blood supply important? According to the American Red Cross, sickle cell affects close to 80,000 African Americans in the United States, all of which will need blood transfusions at some point. And while O negative is a type that can be matched with anyone, it is rare and therefore, not in huge supply. Having donors, especially those of African descent, will allow for a larger stockpile of blood types that specifically match African Americans.

    During the evening casino-themed fundraiser, the twins were able to help raise $35,000! This money will go toward scholarships, medical financial assistance, and other social services for people living with SCD. To read more on this year's fundraiser, check out the original article from The Daily Targum here.


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