Guide for New and Future Patients

The Guide for New and Future Patients gives newly diagnosed (or in the process of being diagnosed) patients basic information about systemic scleroderma diagnosis and treatment.  It is written in order to be easily understandable but also provides important information about scleroderma diagnosis, baseline and routine testing, how to prepare for and make the best use of doctor visits, and a basic overview of scleroderma treatment.  It also includes a brief section for family members and friends to help them better understand what the patient is going through and how they can help the patient deal with this challenging disease.

Guide for Family and Friends (Future Publication)

This information in the Guide for Family and Friends is mostly extracted from the longer Guide for New and Future Patients™, but has been refocused to help the scleroderma patient’s family and friends better understand the disease and what s/he is going through. It includes an overview of scleroderma including typical symptoms and disease course. It also discusses the major difficulties and frustrations that many scleroderma patients go through before finally being diagnosed, often years after first seeing their doctor with initial symptoms of the disease. It also helps family members and friends better understand what the patient is going through so they can be more supportive and help the patient better deal with this life-changing disease.

“Diffuse”? “Limited”? “Overlap”? “Sine”?: Know Your Terms and Your Antibody Type

When patients start searching the Internet for information about systemic scleroderma, they will often encounter a lot of different terms that can be very confusing.  This article can help patients quickly understand some of the terms they will encounter in these online searches.  It also provides some basic information about scleroderma related antibodies and why it is important for patients to know what antibody they have.

Yes, You DO Have Internal Organ Involvement, But…

Patients often have a lot of misunderstanding about scleroderma, often believing that it is primarily a disease of the skin.  The common usage  of the term “limited scleroderma” for limited cutaneous systemic sclerosis adds a great deal of confusion since many patients interpret “limited scleroderma” to mean that it is limited to the skin and does not have internal organ involvement.  This article explains that the disease they are dealing with – systemic sclerosis – always includes internal organ involvement, but in many cases, the internal organ involvement never leads to clinical manifestations that affect the patient.

Understanding Medical Research – Part 1

The goal of this three-part series is to educate patients so they can better sort through and “weigh” the many different types of information that they will encounter when seeking help from “Dr. Google”, i.e., searching the Internet to better understand their disease.  After reading all of the information in this series, patients should have a good understanding of what not to believe, what to believe, and how much to believe, as they weigh the vast quantities information that is quickly and easily available in this modern world of social media and Google searches.

Here is what is (will be) included in this series:

1. Testimonials, Anecdotal Reports, Case Studies, and Single-Patient Research: one patient at a time
2. Observational Studies: lots of people, lots of problems (Future Publication)
3. Clinical Research Studies: from open label pilot studies to the “gold standard” (double-blind randomized controlled trial) (Future Publication)

Video: Therapeutic Plasma Exchange for the Treatment of Systemic Sclerosis: A Guide for Clinicians

This video is an overview of the research literature on therapeutic plasma exchange (TPE) as a treatment for systemic sclerosis. In addition to an overview of the published research on the use of TPE as a treatment for systemic sclerosis, it also discusses important topics such as safety, cost, venous access, and other issues that need to be considered when evaluating TPE as a potential treatment option.  

Therapeutic Plasma Exchange: A Guide for Newbies

While therapeutic plasma exchange is a routine, safe procedure that is widely used to treat a number of disorders, especially neurological disorders, it is not common used in the treatment of rheumatic diseases.  This document is written for patients (and family members) who are about to start TPE and is designed to make the TPE experience as successful and comfortable as possible.  We recommend that clinicians also read this document in order to be able to work more effectively with patients who are about to start to individual trials of therapeutic plasma exchange.