Beneath the Surface: The Scleroderma Project

In September of 2009 I lost my mom to a disease called Scleroderma. It quickly and aggressively took my mom from my family and we lost her just a few short months after being diagnosed with a disease we never knew existed.  In my search for answers, I was led to a wealth of information about Scleroderma from patients and doctors. I quickly realized that while hundreds of thousands of patients suffer from Scleroderma, the majority of people have never heard of the disease. While awareness remains elusive, Scleroderma is a global problem and over 75% of all patients are women. Scleroderma is an autoimmune disease that triggers cells within the body to produce too much collagen.  The excess collagen inhibits the normal functioning of the internal organs and causes skin tightening. The majority of patients show symptoms on their skin, hands, joints, and faces. There are three main forms of this disease: Limited Scleroderma, which causes skin thickening on the fingers and/or face; Systemic Scleroderma, which affects the internal organs such as the gastrointestinal tract, heart, lungs, or kidneys; and Linear Scleroderma, which produces bands of hardened skin across the face or on a single limb. Patients and families affected by Scleroderma are desperate to bring awareness to the disease.  In order to help bring immediate attention to this issue, I set out to interview patients with the goal of sharing their stories through a documentary film. This is how Project Scleroderma beg...
Source: Disruptive Women in Health Care - Category: Health Medicine and Bioethics Commentators Authors: Tags: Advocacy Chronic Conditions Guest Posts Patients Uncategorized Source Type: blogs