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  1. This Week in Sickle Cell News: Awareness, Perseverance, and Anti-Stigmatization

    May 21, 2018 by Andrea

    ntjanadonald-nappy-5462


    We're always scouring the internet and social media to find sickle cell questions that need answering, products that have recently been released, and topics that require more discussion -- all of which fuel our own article ideas. This week, we'd like to share our top three favorite write-ups from across the web that tackle sickle cell research issues, show more examples of warrior perseverance, and help doctors overcome biases toward SCD patients.

    Here are the articles that stood out to us these past seven days:

    CONTINUED LACK OF FUNDING
    For 100 years, the scientific community has known about the existence of sickle cell disease; however, only two drugs have been approved specifically for the treatment of sickle cell in that time. Many believe the reason for sickle cell's lack of research funding and awareness is linked to the general apathy about the disease, since a large portion of patients are of African descent.

    Read the full article here.

    DREAM CHASER
    Diagnosed shortly after birth, 13-year-old Aliyana McCrary has been competing in pageants since she was 2. Recently, she won her first title (in a regional competition), and now, she's preparing for nationals. We love this story about how she never lets her condition hold her back. Check out her GoFundMe to help her get to nationals -- any amount raised in excess will be donated to the Sickle Cell Foundation.

    Read the full article here.

    ANTI-STIGMATIZATION STUDY
    A study out of Johns Hopkins School of Medicine tackled the idea that doctors whose patient notes contain stigmatizing language can affect that patient's care long-term. Using two sets of notes -- one without stigmatizing language and one with -- about a hypothetical African-American sickle cell patient, the researchers recorded the different reactions by a group of residents and medical students who'd read one versus the other.

    Read the full article here.


  2. Sickle Cell Summer Reading List

    July 27, 2015 by Andrea
    Man reading newspaper

    Photo: Kaboompics.com



    This summer is flying by and with all of the busyness and vacation fun, you've barely had a chance to keep up with what the sickle cell community has been talking about. We've got your back with a round up of 3 hot sickle cell topics in the news for July:

    1) Swimming With SCD
    We all know the dangers associated with extreme temperature changes and sickle cell disease, and one of the main issues with summertime for warriors is swimming. To remedy this, London-based mom Shantel Brand is working toward developing swimming classes that can take place in a heated, hydrotherapy pool. Read more at the Sickle Cell Society.

    2) There's An App For That
    Besides the VOICES Crisis Alert App, which was designed especially for people with sickle cell, more health apps have begun hitting the market. Here's a list of 5 that were highlighted by Johns Hopkins -- those with SCD may especially be interested in The I.V. Doc, an app that allows you to request on-demand hydration therapy. Read more at Johns Hopkins Medicine.

    3) Sickle Cell At The Movies
    Since it's release back in June, the movie "Ted 2" has come under fire from many sickle cell warriors. At the same time, many others living with SCD haven't taken offense and see it as just another way to bring light to the disease. Another film, Lia, which follows the struggles of a UK teen trying to balance her disease with living a normal life, began screening in London this month. Read more at Eclectica Films Productions

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