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:
- Testimonials, Anecdotal Reports, Case Studies, and Single-Patient Research: one patient at a time
- Observational Studies: lots of people, lots of problems (Future Publication)
- Clinical Research Studies: from open label pilot studies to the “gold standard” (double-blind randomized controlled trial) (Future Publication)
Antibiotic Therapy for the Treatment of Systemic Scleroderma
Antibiotic therapy (frequently described as Antibiotic Protocol or AP therapy) is probably one of the most controversial treatment approaches for people with systemic scleroderma (as well as other autoimmune diseases). This brief, informal article discusses some of the background information on this treatment approach and suggests some additional research that can be done to better understand whether or not AP therapy might be an effective treatment option for a subset of systemic scleroderma patients.
Please note that some of the following articles may require medical training to fully understand.
Scleroderma ANA and Antibody Testing Basics
This introductory article discusses issues related to ANA and antibody testing for patients who have or might have systemic sclerosis. It includes a discussion of research that shows that current testing methods commonly used for ANA and antibody screening have a high likelihood of falsely indicating a negative ANA result because of missing key SSc-related antibodies, often leading to incorrect or delayed diagnosis and treatments.
How to Do Scleroderma ANA and Antibody Testing Correctly
This article is a short, bullet point summary version of the information found in the Scleroderma ANA and Antibody Testing article. It briefly covers the problems resulting from changes in ANA testing methodology and details how to most effectively do appropriate ANA and antibody testing to help in clinical diagnosis of patients that may have systemic sclerosis or a scleroderma overlap syndrome such as Mixed Connective Tissue Disorder.
Changes in ANA and Antibody Levels In Scleroderma
This article was prompted by a question asked by a patient wondering why her ANA suddenly becoming negative after having been positive for many years. It discusses the research on when and how ANA and antibody levels change over time and the clinical significance of these changes.
The Puzzle of ANA-Negative Systemic Scleroderma
Research studies consistently show that between 5% and 10% of patients with clear systemic scleroderma symptoms repeatedly test negative for ANA when done by the “gold standard” IFA method. This paper discusses this unusual situation.
Therapeutic Plasma Exchange as a Treatment for Systemic Sclerosis
Therapeutic plasma exchange (TPE) is a procedure in which a large volume of plasma is replaced by a substitute fluid in a continuous flow process. A recent review of 46 published papers on the use of TPE as a treatment for SSc suggests that long-term TPE may offer a low-risk treatment alternative to current treatment approaches that focus on the use of immunosuppression. This articles provides detailed information about TPE, including discussions about safety, cost, and venous access.
Suggested Protocol for a One-Year Trial of Therapeutic Plasma Exchange for Treating Systemic Sclerosis
The purpose of this document is to provide background information for clinicians and patients who have reviewed the research literature on the use of therapeutic plasma exchange (TPE) to treat systemic sclerosis (SSc) and made the determination that this may be an appropriate treatment option. This paper includes discussions of TPE safety, cost, and venous access as well as providing background information on TPE to guide the clinician. While this is not intended to be a formal research proposal, it is hoped that by following a standardized protocol for administering TPE, as well as including a basic set of objective measures during the trial of TPE, we may be able to glean important information that can be used as the basis for future well-designed clinical trials of TPE for treating patients with SSc.
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.