Author Archives: Nicola Whitehill

Journal of Scleroderma and Related Disorders Publishes First Volume

JOURNAL OF SCLERODERMA AND RELATED DISORDERS (JSRD) Volume 1 The official journal of THE WORLD SCLERODERMA FOUNDATION and THE EUROPEAN SCLERODERMA TRIALS AND RESEARCH GROUP (EUSTAR) ‘INTRODUCING THE JOURNAL OF SCLERODERMA and RELATED DISORDERS, a challenge for the future of our community’ This is the Editorial…

Mobility: An Ssc Patient Perspective

In September 1997, I was diagnosed with diffuse Systemic Sclerosis (scleroderma) and told by my medical consultant at that time that I would have to use a wheelchair by Christmas. Nine months later, I changed my medical consultant to the super-human beings who are Prof. Dame…

Fatigue in Systemic Sclerosis: An Unwelcome Symptom

The fatigue that accompanies scleroderma is not only an unwelcome, relentless symptom that is difficult to control and manage, but also can quite often be overlooked, with the initial management of the disease focussing on the more important (quite rightly), life threatening skin and organ fibrosis progression. There are…

Why Global Collaboration Is So Important to Systemic Sclerosis Patients

The 4th Systemic Sclerosis World Congress was held Feb. 18-20 in Lisbon, Portugal, and organized by the World Scleroderma Foundation, which describes itself as “a nonprofit, non-governmental foundation based in Switzerland, which functions as a research organization in favor of patients suffering from scleroderma.” The Foundation’s Mission Statement:…

Rare Disease Day 2016: a Highlight on Scleroderma

I am very excited to make Rare Disease Day 2016 the focus of my first post for Scleroderma News. What is Rare Disease Day? From Eurordis.org: “Held each year on the last day of February, Rare Disease Day is an annual awareness-raising event coordinated…