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:…
On Wednesday 2nd March 2016, I had the honour of attending the Rare Disease UK reception for rare diseases at the House of Commons hosted by Liz Kendall MP. This is the fourth time that Liz has hosted the annual reception for recognising rare disease day, which…
I am very excited to make Rare Disease Day 2016Â 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…
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