This Guide for New and Future Patients™ is a companion document to the Scleroderma FAQ™, also available through the Scleroderma Education Project website: www.SclerodermaInfo.org. Think of the main Scleroderma FAQ as the 50-page User Manual that came with your shiny new 65-inch ultra high definition TV. This Guide is the equivalent of the Getting Started Guide that also came with the TV. While this Guide includes some basic information extracted from the Scleroderma FAQ, it has a very different focus.
In addition to giving a basic overview of scleroderma, it is designed to help patients get diagnosed as quickly and accurately as possible. It helps you to be better prepared for your doctor visits and also includes information about tests and procedures that are commonly ordered for patients with scleroderma. After a brief overview of how scleroderma is treated, it also includes some information that should help your family members better understand what you, as a scleroderma patient, are going through.
Here is what is included in this Guide:
- Scleroderma Overview – This initial section gives a general description of the scleroderma family of diseases and discusses the affected population, possible causes, and typical symptoms.
- Scleroderma Diagnosis – Diagnosing someone with scleroderma can be a lengthy and challenging task, even for a specialist with a lot of training in autoimmune diseases. However, most of the time the initial stages of diagnosing scleroderma are usually done by a primary care practitioner (PCP), such as an internist, Family Medicine doctor, or nurse practitioner with little or no experience with a rare disease like scleroderma. This section of the Guide is designed to help you and your PCP avoid common major problems that can result from ordering the wrong diagnostic tests.
- Preparing for Your Doctor Visit – This section of the Guide helps you be prepared to make the best use of your time when visiting your primary doctor or specialists. It includes some suggested questions and other information that will help you to make sure that these visits are as productive as possible.
- Baseline and Routine Testing – This section describes many of the common tests that may be ordered to help during the diagnostic stages or later, if you are eventually diagnosed with some type of scleroderma.
- Scleroderma Treatment Overview –Tthis section of the Guide gives an overview of scleroderma treatment approaches, including some treatment approaches that are considered experimental or alternative.
- A Note for Family Members and Friends – Scleroderma affects everyone in a family and a relationship, not just the patient. This section of the Guide can help family members and friends better understand what the scleroderma patient is going through and how they can best be supportive.
You may wonder about the part of the title of this document: “and Future Patients.” If you are not yet diagnosed with scleroderma, why are you looking for information about this rare disease? The reality is that diagnosing scleroderma, as will be discussed later in this document, can sometimes be very tricky. Most people start their diagnostic journey with a primary care provider (PCP), typically a family medicine or internal medicine doctor, or increasingly these days a primary care nurse practitioner (NP). Many PCPs will see at most one or two patients with scleroderma in their entire career. Ultimately, patients with scleroderma need to be under the care of a rheumatologist – someone who focuses on autoimmune diseases like rheumatoid arthritis, lupus, or scleroderma. But even then, many rheumatologists see very few scleroderma patients, and only a very small number of rheumatologists specialize in this disease, since it is much less common than other autoimmune conditions that they treat.
Early in the diagnostic process, a skilled PCP may realize that something is going on with a patient that might be an autoimmune disease and order initial diagnostic tests to try to narrow that possibility down . (There can be major problems with the wrong tests being ordered – more on this later.) The results of the initial testing may be enough to suggest that the patient is dealing with an autoimmune disease, but without further testing, it is not clear whether the patient might have lupus, scleroderma, or Mixed Connective Tissue Disease (MCTD). At this point, if you are that patient, you probably searched the Internet for information about all of these diseases and may have located this website during your search. So that is one way you might get here even without a scleroderma diagnosis.
However, in this modern age it is very common for patients to realize at some point that they have symptoms that are not right and start Googling those for more information, e.g., Raynaud’s, heartburn, puffy fingers, etc. If they are skilled at doing intensive Google searches, they might find sites that steer them to decide (usually incorrectly) that they have late stage diffuse scleroderma and have only a few months to live! Also, since they now can’t breathe (because they are in a panic) and their heart is pounding, they have even more symptoms than they thought, confirming the seriousness of their “Google Diagnosis.” One objective of this website and this document is to provide clear and accurate information to assuage any panic arising from reviewing multiple sources, some scary, and give patients correct guidelines to help them move forward with their providers.
The third category of patients who are likely to be reading this document are those that have gone through the (sometimes long) process of actually getting a diagnosis and want to learn more about their disease, so they can better understand what they are dealing with and how to share this information with their family and friends. This new Guide is a good place to start, but when you are looking for more detailed information about scleroderma diagnosis and treatments, you will instead want to refer to the main Scleroderma FAQ.