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Trusted Resources: Evidence & Education
Scientific literature and patient education texts
Ask Dr. Kevin: Shedding Light on the “Invisible Symptoms” of Sickle Cell Disease
source: Pfizer Rare Disease in collaboration with the National Newspaper Publishers Association
year: 2018
authors: Dr. Kevin Williams
summary/abstract:September was Sickle Cell Awareness Month in the United States. Every year at this time, I like to take a moment to reflect on all the incredible work being done by and for the sickle cell disease (SCD) community, while recognizing that we have a lot left to do.
Great strides are being made in raising overall awareness about SCD, but I believe there remains an urgent need to increase understanding that SCD is not just a physical disease. SCD can affect all aspects of a patient’s life, including emotional well-being.
What I’ve heard time and time again from people living with SCD is that they often feel isolated in their journey. Kyle, a patient living with SCD, recently summed it up nicely when he said, “Sometimes it is hard to just get out of bed. What it means to live in pain is not something that many can truly understand.”
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This platform is made possible through a partnership with the Sickle Cell Disease Association of America, Inc. (SCDAA) and its member organizations. SCDAA's mission is to advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure.