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patient education

Ask Dr. Kevin: Shedding Light on the “Invisible Symptoms” of Sickle Cell Disease

key information

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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