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  1. The FDA Wants to Hear from You. Here’s How to Make That Happen.

    June 12, 2018 by Andrea

    savannah-walters-504059

    Last month, the Food and Drug Administration (FDA) announced it would be holding a public meeting all about chronic pain, in hopes of learning, directly from people living with chronic pain, more about what patients go through and how treatment is given. As the date draws nearer -- the event will be held on July 9, 2018 from 10 a.m. to 4 p.m. at the FDA's White Oak Campus in Silver Spring, Maryland -- we wanted to encourage sickle cell warriors to make their voices heard, whether in person or via letter. 

    It's no secret that sickle cell warriors, a large number of whom are of African descent, face stigma and prejudices when it comes to securing the medications needed for their severe pain. Many times, doctors will make assumptions that the person seeking help is an addict and refuse to believe their pain is as intense as they say. Chart notes reflecting this can also potentially affect a person's future treatment, as well. While there have been studies published, articles written, and even TV shows dedicated to calling out such ill treatment of this specific group of people, the prejudices continue. The best way to help push the medical community toward necessary change as a whole is to speak out -- and never stop until that change is made. 

    According to the announcement, the "FDA is particularly interested in hearing from patients who experience chronic pain that is managed with analgesic medications such as opioids, acetaminophen, nonsteroidal anti-inflammatory drugs (NSAIDs), antidepressents; other medications; and non-pharmacologic interventions or therapies." If you can't make it to next month's meeting in person, the FDA wil be accepting written comments (e-mail or regular mail) about your experiences with chronic pain through September 10, 2018. You can find details on sending your submission here.


  2. 5 Must-Read Motivational Books for Every Sickle Cell Warrior

    September 22, 2016 by Andrea
    Photo: stocksnap.io

    Photo: stocksnap.io



    While strength is characteristic of many sickle cell warriors, no one can be strong every single day. So, whenever you fell yourself drifting into worry, self-doubt, or depression during a crisis or just a bad day, reach for one of these reads: 


    1) The Four Agreements by Don Miguel Ruiz
    This book shares the "source of self-limiting beliefs that rob us of joy and create needless suffering. Based on ancient Toltec wisdom, The Four Agreements offer a powerful code of conduct that can rapidly transform our lives to a new experience of freedom, true happiness, and love." -amazon.com 

    2) The Gifts of Imperfection by Brené Brown
    "In The Gifts of Imperfection, Brené Brown, a leading expert on shame, authenticity, and belonging, shares ten guideposts on the power of wholehearted living—a way of engaging with the world from a place of worthiness." -amazon.com

    3) Peace in the Storm: Meditations on Chronic Pain and Illness by Maureen Pratt
    "A devotional for anyone who lives with the spiritually challenging presence of chronic pain and illness. This book contains short chapters that include a Scripture verse, meditation, and prayer focused on one aspect of struggling with health issues, each of which is meant to encourage, inspire, and strengthen the reader's inner spirit and make his or her walk with God more joy- and peace-filled." -maureenpratt.com

    4) 365 Days of Positive Thinking by Jenny Kellett
     
    Chock-full of quotes, such as "Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time" and "Nothing is impossible; the word itself says, 'I'm Possible!', this book provides empowering bites of motivation for each day of the year.

    5) Chicken Soup for the Unsinkable Soul by Jack Canfield, Mark Victor Hansen, and Heather McNamara
    "Sure to become a favorite of readers who love Chicken Soup for its stories of overcoming life's obstacles, challenges, heartbreaks and pain, this book emphasizes triumph in the face of overwhelming odds." -chickensoup.com


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