Yes, You DO Have Internal Organ Involvement, But…

(Please note – this article was reviewed for accuracy by two physicians, one of whom is a top scleroderma expert.) 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… Continue Reading

Share

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… Continue Reading

Share

Scleroderma Patient in Long-Term Remission with TPE Treatment

From Scleroderma News (SclerodermaNews.com), December 3, 2015: Case study followed CREST syndrome patient for 21 years “A new case study revealed that long-term treatment with therapeutic plasma exchange (TPE) led to successful symptom management and disease remission in a patient with CREST syndrome, or limited systemic scleroderma. The study, recently presented at the AABB Annual Meeting in California, is entitled… Continue Reading

Share

Understanding the New 2013 Formal Diagnostic Criteria for Systemic Scleroderma

(Note: This is extracted from the Differential Diagnosis section of the Scleroderma FAQ.) 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… Continue Reading

Share

Recommended New Documentary on Scleroderma

Narrated by Bob Saget, “Project Scleroderma: Beneath The Surface” is a film that documents the grass-roots mission of a young woman, Christy McCaffrey, from Philadelphia working to raise awareness for a scarcely known disease that took her mother’s life. In this highly inspirational and hopeful story, viewers follow Christy as she works diligently to create… Continue Reading

Share

Understanding Medical Research – Part 1

Background When someone is first diagnosed with a serious illness like scleroderma, many people turn to the Internet to supplement the information they received from their doctor. The amount of information that patients receive from their doctors varies widely – from just a basic verbal “There is no real treatment but we can deal with… Continue Reading

Share

Should I See a Scleroderma Expert?

One of the patients that I am working with asked me whether she should go see a scleroderma expert. It would be a very long trip and she was concerned that they might not really have anything to offer beyond what her local docs were already doing. Here is my response to her: ——————————————- xxxxx, This… Continue Reading

Share