Living The Dream - Nicola Whitehill

The BSR held its annual conference recently in Glasgow. There were 3 sessions dedicated to Systemic sclerosis, scleroderma, over the duration of the 3day conference. Will Gregory, Ssc specialist physio, kindly shared his experience of day2 with Scleroderma News readers. To read the article, click here…

A Spotlight on the Ssc Scleroderma Symptom Hypopigmentation Sarah Jatto from Clapham, South London was diagnosed in 2009 with diffuse Ssc at age 19. Sarah has very kindly agreed to share her experience with the symptom of Hypopigmentation. ‘Hypopigmentation, also known as vitiligo, is something I…

DATE FOR YOUR DIARY: The webinar will take place on Wednesday, May 4th, 6:00pm London time, 7:00pm Madrid, 1:00pm New York City, 10:00am Los Angeles It gives me great pleasure to announce that Rareconnect have invited me to be a presenter at this forthcoming Webinar, along with Timo Söderlund, …

On Tuesday 26th through to the 28th of April, The British Society for Rheumatology held their annual conference, with this year’s venue being in Glasgow. Last year, it was held in Manchester, and I had the honour of being a presenter at one of the Ssc Scleroderma sessions. My presentation…

Spotlight on the Ssc Patient and HSCT: Katrina Brown ‘My name is Katrina and I served in the British Army 1999-2004 as a Combat Medical Technician. Feeling ill with a variety of symptoms including increasingly severe Raynaud’s, it wasn’t until April 2008 that I was diagnosed…

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…

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…

June 29th is recognised around the world as being World Scleroderma Day. This date is an opportunity for anybody with an interest in scleroderma (systemic sclerosis) to join together as a single, united global voice, to shine the spotlight on this relatively little understood rare disease.

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…

Wyatt Wright a.k.a (Wyatt The Warrior) is a 9 year-old young man who was diagnosed with Localized Scleroderma (linear) at the age of 8. Wyatt takes 6 ½ tablets a day and a weekly chemo injection. He is also getting ready to have his second knee surgery…

    Spotlight on the Ssc patient: Maria Alice Martins Correia; Geneva, Switzerland   For my blog this week, I would like to introduce Alice to you. Alice is without doubt, one of the bravest pioneering patients of the global Ssc community, and whose story personalises…

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:…