The Scleroderma FAQ* is a comprehensive document that covers systemic scleroderma diagnosis and treatment. It is written in a language that most patients should be able understand but also includes medical terminology that patients will encounter when working with their clinicians. All information contained in the FAQ is based on current medical research and includes up-to-date information on new diagnostic criteria and treatments for systemic scleroderma.
Here is what is included in the Scleroderma FAQ:
- General Description – This initial section gives a general description of the scleroderma family of diseases.
- Differential Diagnosis – This section of the FAQ discusses localized forms of scleroderma that don’t have systemic involvement and other diseases that have similar symptoms but are not in the scleroderma family of diseases. It discusses in detail a new diagnostic criteria for systemic scleroderma that was adopted in 2013. It also discusses a controversial special diagnosis that is sometimes given to patients who have internal organ involvement but no skin changes.
- Affected Population – This section of the FAQ describes the incidence (number of new cases per year) and prevalence (number of patients with a diagnosis) of patients with a systemic scleroderma diagnosis. It also talks about age and gender distribution of systemic scleroderma patients.
- Causes – Systemic scleroderma is considered to be a disease that requires genetic susceptibility and exposure to some type of trigger event, for example exposure to organic solvents or silica dust.
- Symptoms – Systemic scleroderma affects many internal organs in addition to the skin. This section of the FAQ discusses affected organs, including skin, musculoskeletal (muscles and joints), pulmonary (lungs), gastrointestinal, cardiac (heart), renal (kidney), sexual dysfunction, and other symptoms.
- Scleroderma Antibodies and Clinical Relevance – There are currently about 10 known scleroderma specific antibodies, each of which has a different clinical profile. In addition, a small percentage of patients diagnosed with systemic scleroderma test negative for antibodies. This section of the FAQ lists the known antibodies and general classification and risk profile.
- Pregnancy and Scleroderma – Since about 80% of diagnosed systemic scleroderma patients are female and middle aged, the FAQ includes a discussion on the effects of systemic scleroderma on fertility, and pregnancy. It also includes a discussion on how pregnancy can affect scleroderma symptoms.
- Treatments – General: Standard / Multi-Symptoms – This section of the FAQ focuses on systemic level treatments and includes a list of the most common drugs used in scleroderma treatment, potential side effects, and other issues related to each of these drugs.
- Treatments – General: Research-Based Experimental / Alternative – This section of the FAQ discusses two experimental systemic-level research-based treatments that are sometimes used to treat patients with systemic scleroderma: 1) autologous stem cell transplants, and 2) therapeutic plasma exchange.
- Treatments: Specific Symptoms – In addition to systemic level treatments discussed previously, much of the treatment focus is on dealing with individual symptoms. This section of the FAQ covers treatments focused on individual symptoms such as Raynaud’s, skin changes, muscles and joints, lungs, gastrointestinal, heart, kidney, and other symptoms including sexual dysfunction and depression.
- About Scleroderma Research – This section of the FAQ gives information about scleroderma research as well as information about how to better interpret published research studies.
* When the Scleroderma FAQ was first published online in 1995, it was formatted as a F.A.Q (Frequently Asked Questions) style document. Over the years, the format of the FAQ has changed, but we decided to maintain the original “Scleroderma FAQ” name for consistency.