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  1. Sickle Cell Warriors in Cameroon Still Face Dangerous Prejudices and Labeling

    May 28, 2018 by Andrea

    Photo for illustrative purposes only

    We talk about the stigmatization of sickle cell here in the U.S., especially when it comes to doctors using biased language in their patient notes, which can affect the quality of a person's healthcare long-term. But in some countries, such as Cameroon, such stigma can lead to death.

    As reported by Reuters, many people in Cameroon still hold the belief that children with sickle cell are actually witches or sorcerers who's mission is to destroy the families they were born into. Some are abandoned by their parents, some are purposefully neglected, and, in extreme cases, some are killed. One woman interviewed for the Reuters article describes suffocating her 5-year-old son last year because she was told his illness was mystical and would ruin her life. "I killed my child because he was going to die anyway," she told the news service. "Before, he was suffering greatly. Now, he is at peace."

    This isn't a new development for the country, but since this belief still persists, a lot more must be done to raise awareness and educate communities there, especially since Cameroon has a population of about 400,000 sickle cell warriors. In past years, Cameroon health officials have encouraged genotype testing before marriage and offered some free or reduced treatment costs. However, those living there with SCD now feel that to truly have a chance at ending this disease, genotype tests should be free -- and mandatory.

    You, too, can help sickle cell warriors living in Cameroon. Perhaps, in honor of the upcoming World Sickle Cell Day, you can donate to help equip a sickle cell lab in Cameroon via GlobalGiving.

    Read the full article here.

  2. Boston School District Finally Recognizes Sickle Cell Disease as Impeding a Student’s Education

    February 13, 2018 by Andrea


    Last week, the Boston Globe reported that the Boston, Massachusetts public school system has officially decided to recognize sickle cell disease as a disability that can affect a child's education. For a condition that has been known to exist for more than 100 years, this is long overdue.

    Because of the occurrence of crises, hospitalizations, and other complications that can arise with sickle cell warriors, students are often forced to miss classes -- upwards of 20-30 days, according to a 2006 study. And as recently as 2016, the journal article "School Performance and Disease Interference in Adolescents with Sickle Cell Disease" confirmed that "missing school can have [a] significant impact on educational attainment in adolescents with SCD; attainment is measured through grade retention, special education rates, and letter grades." The article goes on to say, "Difficulties associated with missed instruction are further complicated by subject matter that builds on previous knowledge such as mathematics and foreign languages. Additionally, adolescents may miss exams and standardized tests."

    For these very reasons, the Center for Law and Education, along with the Massachusetts Law Reform Institute, filed a complaint against the Boston school system back in 2015, the Globe reports. This lead to a series of adjustments in school policy and ultimately to the official recognition as stated earlier. According to the Globe, the school system has also created a Sickle Cell Advisory Group.

    Every school district in this country can look to Boston as an example of how to reform its own policies addressing students with disabilities, so all students do indeed receive a "free and appropriate" education. Does your local school district recognize SCD as a disability that can inhibit a student's education? Tweet us @XickleRBC and let us know!

  3. 12-Year-Old Writes Comic Book to Help Kids Battle Their Illnesses

    October 9, 2017 by Andrea

    Photo: thesickler.com

    Comic books about superheroes have always been classics, and with the resurgence of the genre via movies and series, such as "Luke Cage", "Jessica Jones", "Black Lightning", and "Daredevil", just to name a few, these stories are more popular than ever.

    Drawing on this popularity, 12-year-old Parker Todd, a sickle cell warrior himself, decided to write a comic book in which a boy named Chase Parker transforms into his superhero alter ego to help kids fight their illnesses. Parker's first book, "The Adventures of the Sickler" is inspired by his own struggles with SCD.

    "I was thinking, 'What do I wanna do to help uplift other kids and myself?" he said in a recent interview with NYC's PIX 11 channel news. "I sorta thought, maybe, a superhero type of vibe because, you know, who doesn't like a good superhero story?"

    Want to add this book to your collection? Visit thesickler.com to order your copy for $15. Bonus: A portion of the proceeds from the book's sales will be donated to the Sickle Cell Thallassemia Patient Network.

    Hear Parker's entire story by watching the full interview below:

  4. Family Activities for a Sickle Cell-Friendly Fall

    October 2, 2017 by Andrea
    fall activities

    Photo: @snapavelli from nappy.co

    Every year, the first Monday in October is recognized as National Child Health Day. That makes today (and every day) the perfect time to teach children with sickle cell how to stay healthy all year round while still having fun and living a normal life. To start, here's a list of fall activities and ideas that can help kids learn to identify things they can do, and avoid triggering a crisis when the weather cools off.

    1) Go apple picking.
    One of the most popular autumn activities, apple picking gives kids a chance to be outdoors when it's not too hot or too cold, and learn a bit more about healthy food options. Many of these farms also have full-on fall festivals, so once you're done picking your fruit, you can take a hay ride around the property while you sip on warm apple cider and snack on kettle corn.

    2) Get lost in a corn maze.
    A great source of low-impact exercise, corn mazes are fun for the whole family. Not only do these mazes get you moving, but they also help work your mind, as you and your kids can work together to figure the way out. Be sure to layer up and bring along water bottles to stay hydrated.

    3) Rake leaves together.
    Reiterate to your children the importance of layering when it's chilly outside, especially as sickle cell warriors, and then get them moving a bit by allowing them to help you rake the leaves. And of course, as a reward for their help, they've got to do the most fun part -- jumping in the pile.

    4) Have a movie marathon.
    Temps too low for outdoor fall activities? Let your child know that when this happens, it's best to stay inside for most of the day. Staying in doesn't have to be boring though: You can watch a marathon of fall-themed Hallmark movies, play board games, and read together.

    5) Cook or bake together.
    There's nothing like cozying up with the fam in the kitchen to create a delicious fall menu -- especially one that's healthy. Consider items like pumpkin muffins, squash soup, roasted brussels sprouts, and kale chips, for example.

    What activities do you plan to participate in this fall? Tell us in the comments below, or tweet us @XickleRBC.

  5. New Study Hopes to Show that Exercise is Actually Safe for Kids with Sickle Cell

    May 30, 2017 by Andrea


    Whether it's at school recess or with friends in the neighborhood on weekends or during summer break, there's no denying that kids love to play -- and play hard. From intense games of tag to spirited jaunts on the jungle gym, kids can get into vigorous exercise without even trying too hard. Such robust romps worry parents and caregivers of young sickle cell warriors because they believe that increased inflammation brought on by exercise could send their child into a full-on crisis. A new study -- which the National Heart, Lung, and Blood Institute funded with a $2.7 million grant -- hopes to prove that kids with sickle cell can safely partake in playtime, allowing them to not only get much-needed social interaction with their peers, but also avoid settling into a sedentary lifestyle that could impede their physical fitness at a young age.

    As reported by the Ann & Robert H. Lurrie Children's Hospital of Chicago, Dr. Robert Liem, a lead researcher on this project, believes there are certain levels of exercise that kids with SCD can handle, and during the five-year study, he plans to compare the post-workout effects of 70 kids with sickle cell and 70 kids without sickle cell. "In the upcoming study, the team will look at the different ways moderate and vigorous intensity physical activity affects inflammation," states a news release from Lurrie Children's Hospital. "Their hypothesis is that exercise is safe in this population and does not provoke sickle cell disease related complications. With these data, Liem hopes to develop a future clinical trial to look at whether or not regular exercise may instead have a beneficial impact on this disease."

    The study is expected to kick off this fall, and will include patients at five other hospitals in the country. “We want to see how the genetic changes regulate the inflammation response to exercise. We hope this will provide important evidence of exercise safety in kids with sickle cell disease,” Dr. Liem stated in an interview with the hospital.

    Read more about that study here.

    Additionally, our own clinical trial has shown that SCD-101 (the drug equivalent of Xickle RBC-Plus) may improve a patient's ability to exercise. Anecdotal reports we've received from participants in our trial have stated that warriors taking SCD-101 can walk further and faster. This is great news for kids (and adults) with sickle cell all over the world.

  6. World Cord Blood Day Seeks to Raise Awareness for Sickle Cell and Other Life-Threatening Diseases

    April 10, 2017 by Andrea

    cord blood post

    A new awareness event that will benefit sickle cell disease, among others, is set for November 15, 2017. This event, the first-annual World Cord Blood Day, seeks to educate the public about how stem cells taken from blood in the umbilical cord is a non-controversial method of retrieving and using stem cells to treat dozens of diseases, including SCD.

    According to a recent press release from Save the Cord Foundation, the event's organizers, more than 35,000 cord blood transplants have been done all over the world since 1988 and have treated 80-plus life-threatening diseases -- sickle cell being one of them. Research relating to stem cell transplants of this kind show that the transplants work best when the cells come from a relative (although research relating to donor stem cells is pushing along and has worked in some cases). The thing is, saving cord blood is literally a once-in-a-lifetime opportunity, as it must be done at the time of birth. World Cord Blood Day will help make people aware of how important it can be to save and bank this resource. 

    "We are truly excited about this opportunity to expand cord blood education worldwide while providing a platform for discussion focused exclusively on this valuable medical resource," Charis Ober, Executive Director of Save the Cord Foundation, said in the press release.

    So far, partners for this premier event include the Cord Blood Association, Be the Match, the World Marrow Donor Association, the American Association of Blood Banks, and the Foundation for the Accreditation of Cellular Therapy. Participation in the very first World Cord Blood Day is easy: You can sign up to learn about events near you, attend the free virtual conference, and/or join in the discussion on social media using the hashtag #WCBD17.

    Another movement to help raise awareness about sickle cell treatment and other diseases? That's a definite win.

  7. Giving Blood Helps: 4 Sickle Cell Warriors Share Their Stories

    September 15, 2016 by Andrea

    We all know how important it is to donate blood for sickle cell patients, but we don't always know the actual impact our donations have on the recipients' lives. In honor of donors, soon-to-be-donors, and warriors everywhere this Sickle Cell Awareness Month, we'd like to highlight a few stories from those whose lives have been made better through blood donation.

    1) Taytiana's Story

    2) Marquita's Story

    3) Stacey's Story

    4) Joshua's Story

    Do you have an experience to share about how blood donation has touched your life -- whether a donor or warrior? Tell us in the comments below!

  8. 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



  9. Nigeria Receives Generous Donation from Billionaire to Build a Sickle Cell Clinic

    June 6, 2016 by Andrea


    In the United States, sickle cell disease is seen as a rare disorder with just about 1,000 babies being born with the disease each year. But, as we know, SCD is a global health concern, and in contrast, sickle cell is quite common in sub-Saharan Africa -- especially in Nigeria. It is estimated that there, more than 100,000 babies are born with SCD each year.

    That's why the announcement made on May 29, 2016 that oil tycoon and Nigerian billionaire, Prince Arthur Eze donated N5 million (about $25,100 in U.S. money) to the Association of People Living With Sickle Cell Disorder is so important and exciting. As reported by AllAfrica.com, the money is set to go toward the building of a new sickle cell clinic. "The clinic shall be of a world class standard and shall cater for the medical, psychological, and physical care of all sicklers in the state, and it shall be named after Eze, the sole donor of the project," Aisha Edwards, the Association's co-coordinator, told AllAfrica.com in a recent interview.

    This clinic will help knock down some barriers when it comes to making affordable, specialized, and immediate care available to Nigerians living with SCD.

    For more information on this project, read the original article in its entirety here.

  10. 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!

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