An Evaluation Of The Dystrophic Epidermolysis Bullosa Research Association Of America ( Debra.org )

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We live in a culture that is constantly inundated with streams of information through a variety of social mediums. Patients have unlimited access to an extensive variety of resources regarding medical care through online blogs, websites and social media. In 2009, 45.5% of adults utilized online resources to gain more information regarding their health (Women’s Health USA, 2012). Considering that statistic is antiquated, one would suspect the percentage to have grown significantly over the years with the increase in access to online resources. It is imperative future advanced practice nurses have the ability to guide patients in evaluating what they read online. Can these sources provide reliable and appropriate medical advice? The Dystrophic Epidermolysis Bullosa Research Association of America (Debra.org) is a website dedicated to educating the public about Epidermolysis Bullosa (EB). EB is a rare genetic heterogeneous disorder that affects the connective tissue of the skin. The body is unable to produce the appropriate protein and keratin to provide strength and protection of the skin. As a result, the skin is extremely fragile, blisters it easily breaks down from rubbing or slight friction. The intended audience of the website is to provide resources for parents and caregivers of children with EB. The site was developed by Arelene Pessar in 1980. Her son was born with EB. She created the organization to raise awareness among the general public and government

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