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  1. What The Sickle Cell Community Wants the World to Know

    May 11, 2015 by Andrea

    We all know that, unlike many other rare diseases, sickle cell isn't something the general population talks too much about. There hasn't been an Ice Bucket Challenge-sized viral social media campaign and the only person many people, who aren't affected by SCD, associate with the disease is T-Boz from TLC. And then, the only thing they know is that she has it. 

    But there are still millions of children and adults all over the world fighting sickle cell disease daily, so for the past few days, we decided to pose the following question to our Twitter community: If you could tell the world one thing about sickle cell disease, what would that be? 

    Read some of their responses below and join the conversation by adding your own thoughts and ideas in the comments section. You never know where these ideas could lead!



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  2. The Anatomy of a Hospital Go-Bag

    October 2, 2014 by Andrea
    ©Depositphotos.com/mac_sim

    ©Depositphotos.com/mac_sim



    A couple of weeks ago, a new show called The Red Band Society premiered on Fox. Following the lives of a group of teenagers who reside in a hospital, this show inspired this week's blog post: How to prepare for your SCD child's hospital stay. 

    As you know, a crisis can crop up without warning and require a trip to your nearest medical center. And if you're not quite prepared for that to happen, you may find that you and your child are stuck in a hospital room for days without changes of clothing, toiletries, schoolwork and work necessities, or any form of entertainment, among other things. So, what should you pack? Check out our suggestions here: 

    The Anatomy of a Go-Bag 

    1) Cell phone and charger. Your cell phone can, of course, have multiple uses: a phone (naturally) and a source of entertainment, such as music. Be sure to throw some headphones in the bag, as well, so that you and your child can listen to music without disturbing anyone else who may be staying in the room.


    2) Laptop. If you or your child has any work that needs to be done, this will definitely come in handy. You can also use your laptop to jot down any questions you may have for the doctor and to keep you and your child occupied (think Netflix). 

    3) Toiletries. You may be staying for a few days, so be sure to bring all essentials, such as toothbrushes and toothpaste, contact lenses and cleansing solution, deodorant, facial cleanser, hair supplies, regular prescription medications, etc. 

    4) Changes of clothes. And underwear. Plan to pack at least three days worth, and then, if your stay ends up lasting a little longer, you can always run home and pick up extras. 

    5) Fun Stuff. You may get sick of only watching Netflix and the hospital TV, so make sure you pack other entertainment options, such as board games, card games, books, and toys. Speaking of toys, it's also a good idea to pack a few of your child's favorite stuffed animals for bedtime. A stash of your favorite snacks and a few water bottles are also suggested. 

    Don't be caught off guard -- fill your go-bag with these items, keep it in your car, and you'll be ready for whatever comes your way!

    Do you have a go-bag ready? What did you pack in yours? Tell us in the comments below! 



  3. Resources for Parents of Children with Sickle Cell Disease #SickleHope

    December 13, 2013 by Eric Coles

    Resources for Parents of Children with Sickle Cell DiseaseThere are so many resources available for parents with children of Sickle Cell Disease that can lead to a better understanding of the disease and to parents connecting with appropriate, available resources.

    Having a child with a chronic disease can cause parents to have feelings of hopelessness and confusion.  Especially since Sickle Cell Disease is a genetic trait, parents may feel responsible for their children's illness.  Support groups ensure that parents receive the emotional and mental assistance that they need and the knowledge that they are not alone.

     

    The resource list is state by state and national.

    State by State Resource Guide for Parent information and including Parent Support Groups from the CDC - National Resource Directory on Sickle Cell Disease 

    From the Official Journal of the Academy of Pediatrics - Newborn Screening Fact Sheets 

    North Carolina Department of Health Services - Sickle Cell Syndrome Program 

    American Academy of Pediatrics - Sickle Cell Disease Resource Kit  

    The Sickle Cell Clinical Program at The Children's Hospital of Philadelphia 

    Sickle Cell Disease Association of America 

    American Sickle Cell Anemia Association 

    The Student Athlete with the Sickle Cell Trait 

    Sickle Cell Kids 

    The Child with Sickle Cell Disease - A Teaching Manual from the Texas Department of Health

     

    National Heart, Blood, Lung Institute - What is Sickle Cell Anemia?  

     

     


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