Scleroderma United

Description

Generally classified as an autoimmune rheumatic disease, scleroderma is a group of rare diseases that involve the tightening and hardening of the skin and connective tissues. In some, scleroderma only affects the skin. However, in many patients, it also harms structures beyond the skin, such as blood vessels, internal organs, and the digestive tract.

Our Scleroderma Stories initiative began in January 2020. The first issue featured the journeys of people living with scleroderma in US states from the east to west coast as well as in countries such as South Africa and Canada. In Scleroderma Stories, scleroderma warriors share their hardships, triumphs, passions, and more. This initiative aims to both raise awareness about this rare disease and help patients understand that they are not alone. Every issue of Scleroderma Stories not only shows the hardships of scleroderma but also emphasizes that scleroderma warriors can live incredibly rich lives - even with a chronic disease. Scleroderma Stories has reached over 10,000 people in 78 countries.

Patients with chronic illnesses often discover their own "tips and tricks" and gain knowledge from their lived experiences. SU is launching a new Patient-Led Education Program that will create a community of mutual learning. SU will collaborate with scleroderma warriors to create videos, infographics, articles etc. that share personal experiences with accessibility aids, renal diets, navigating the health system, and more.