“Diffuse”? “Limited”? “Overlap”? “Sine”?: Know Your Terms and Your Antibody Type
Background – 25 Years Ago The names used for referring to the scleroderma family of disease are very confusing for a number of reasons. Historically, there were two known forms of systemic scleroderma: diffuse (originally called Progressive Systemic Sclerosis or PSS) and limited (originally called CREST Syndrome – see the Scleroderma FAQ for full details on the acronym “CREST”). The words “diffuse” or “limited” are associated with how much skin involvement eventually is eventually likely to occur. In diffuse systemic [...]
Yes, You DO Have Internal Organ Involvement, But…
This article was prompted by a post in one of the scleroderma focused Facebook support groups that I am active in. The poster indicated that she had read an article that said that internal organ involvement occurred in the first 7 years and was asking about this. I see posts like this all the time where patients are wondering if or when they might get internal organ involvement with their particular variant of scleroderma. First, [...]
National Public Radio (NPR) Report on the Long-Term Dangers of Heartburn Medicines
This morning, NPR did a report on dangers associated with long-term use of proton pump inhibitors such as Prilosec (omeprazole) and also the fact that it is nearly impossible to get off them. Here is a link to the article on their website: http://www.npr.org/sections/health-shots/2016/02/15/465279217/popular-heartburn-pills-can-be-hard-to-stop-and-may-be-risky. This is a very important story but people with systemic scleroderma need to realize that sometimes the rewards outweigh the risks and that you should not try stopping these meds on [...]
Understanding the New 2013 Formal Diagnostic Criteria for Systemic Scleroderma
In late 2013, the American College of Rheumatology (ACR) and the European League Against Rheumatism (EULAR) approved a new set of diagnostic criteria for systemic Scleroderma, replacing the older 1980 diagnostic criteria. These new standards will improve clinical diagnosis of systemic Scleroderma, but it is very important to understand that the reason for developing these new diagnostic standards was “to develop a set of criteria that would enable identification of individuals with SSc for inclusion [...]