Why Is It Important to Empower People with Rare Diseases?
People with rare diseases often know as much about their conditions as their doctors, says HealthMaker Gary Gibbons, MD, director of the National Heart, Lung, and Blood Institute. In this video he explains why it's important to educate patients.
Transcript
As a rare disorder it's very important to empower patients because in many situations they know as much
about their disease as a primary care provider may. They are aware of the types of things
that might trigger what are called a painful crisis, which is a debilitating pain that these patients suffer
as part of a complication. And so they should have an appreciation for the stressors that bring that on.
The importance of maintaining hydration. And also, being aware of some of the treatments that I talked
about, whether it's taking penicillin prophylactically, being up on their vaccines, getting chronic transfusion,
the drug hydroxyuera. These are things that we know that work. And it's important that patients are empowered to ensure that they're getting evidence based care.
And so, the engagement and education of this patient group is an important part of ensuring we have the best possible outcomes.
sickle cell anemia
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