Scleroderma Defiance: A Practical , Educational and Free Guide for Self-Management of Scleroderma

ECU Author/Contributor (non-ECU co-authors, if there are any, appear on document)

Magen Flanagan (Creator)

Institution

East Carolina University (ECU )

Web Site: http://www.ecu.edu/lib/

Abstract: Scleroderma is a rare and incurable autoimmune disease characterized by overproduction of collagen , which often leads to organ damage and sclerotic tissue. This health condition affects multiple organ systems and tissues , such as the skin and digestive system. In the United States , it is estimated that 300 , 000 people suffer from this disease. Being diagnosed with Scleroderma is life changing and often results in feelings of helplessness and depression. Although there is no cure for this disease at this time , those with Scleroderma can slow the disease progression or even achieve a state of remission. For many , the internet is one of the first resources used to gather information regarding a medical diagnosis and disease management. However , online resources for Scleroderma patients are scarce and information regarding lifestyle modification is virtually non-existent. Nutritional counseling with Registered Dietitians (RD) has been shown to improve health outcomes in Scleroderma patients. Unfortunately , people with Scleroderma are rarely referred to RDs for nutritional consultations , which are not covered by medical insurance. Sclerodermadefiance.com is a free , comprehensive , online resource. It is designed to provide information that will help patients to manage Scleroderma symptoms. The goal is to help Sclerodermadefiance.com users improve health and nutritional status by making this comprehensive online research available free of charge.

Additional Information

Publication

Honors Project

Language: English

Date: 2018

Keywords

Free Resource, Scleroderma Self-Management, Website

Subjects

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