October 24, 2017 by Andrea
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.
Category: Chronic Health Conditions in Children and Adults, Resources for Parents Tags: sickle cell, sickle cell disease and stroke | Comments Off on How One Medical Team is Working Prevent Strokes in Kids with Sickle Cell
October 16, 2017 by Andrea
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:
Category: Chronic Health Conditions in Children and Adults, Sickle Cell Disease Tags: racism, sickle cell | Comments Off on Twitter Praises Health Service for its Swift Response to Racist Tweet About Sickle Cell Warriors
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:
Category: Chronic Health Conditions in Children Tags: Parker Todd, sickle cell, The Adventures of the Sickler | Comments Off on 12-Year-Old Writes Comic Book to Help Kids Battle Their Illnesses
October 2, 2017 by Andrea
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.
Category: Chronic Health Conditions in Children, Exercise, Sickle Cell Disease Comments Off on Family Activities for a Sickle Cell-Friendly Fall
