Medifocus Guidebook on Scleroderma

A Comprehensive Patient Guide to Symptoms, Treatment, Research, and Support

Updated: July 6, 2018
208 Pages


What is Scleroderma?

Scleroderma describes a group of related connective tissue diseases involving skin, joints and internal organs. The term scleroderma literally means hardening (fibrosis) of the skin. The cause of scleroderma is unknown but the disease process is related to a malfunction of the vascular and immune systems. Researchers believe that the immune system, which protects us against infection and cancer, becomes overactive in patients with scleroderma resulting in the overproduction of collagen (connective tissue or "scar" tissue) in the body. The excess collagen is deposited in the skin and in some cases, in and around the organs and that leads to the characteristic hardening and thickening effect.

In some people, scleroderma is localized to the skin while in others, it is systemic with excess collagen building up not only in the skin but in and around various organs such as the esophagus, kidneys, lungs, gastrointestinal tract, heart, and peripheral nervous system. Organ involvement leads to many accompanying complications.

Many people with scleroderma experience a plateau where the condition stabilizes, which is then followed by a period of improvement and skin softening. The most critical period for systemic scleroderma is usually within the first two to five years of onset when there is the highest risk for rapid progression and the development of serious complications.

Most cases of scleroderma are seen initially by a dermatologist and, as the condition progresses, patients often are referred to the care of a rheumatologist. It is important for people diagnosed with scleroderma to be examined and followed by their doctor to evaluate the development of other autoimmune conditions or complications.

Fortunately, scleroderma is a rare disease. Data regarding prevalence and incidence varies widely but estimates are that the prevalence (number of cases present in the population) of scleroderma ranges from 50-300 cases per million people and the incidence (number of people per year diagnosed with scleroderma) ranges from 2.3 to 22.8 cases per one million people per year. This means that scleroderma is believed to affect between approximately 40,000 to 300,000 persons in the United States and some estimates are even higher. The disorder most commonly occurs in women between the ages of 35 and 55, however, men and children can be affected as well. Women are affected approximately 3-4 times as frequently as men.

There is a slightly increased risk for developing scleroderma among African-Americans. African-Americans are also more likely to develop severe lung complications. Native Indians are also at a higher risk than the general population for development of scleroderma. Specifically, Choctaw Indians in Oklahoma are up to 20 times more likely to get scleroderma than the general population.

Scleroderma is not contagious. Genetic factors are thought to be involved in scleroderma since there is a high frequency of other autoimmune disease in families of people with scleroderma. However, most people who develop scleroderma do not have relatives with scleroderma and their children do not have a higher risk of developing the disease.

Knowledge is Critical when Dealing with a Life-Altering Condition such as Scleroderma

If you or a loved one has been diagnosed with scleroderma, it's critical to learn everything you possibly can about this condition so that you can make informed decisions about your treatment. That's why we created the Medifocus Guidebook on Scleroderma, a comprehensive 208 page patient Guidebook that contains vital information about scleroderma that you won't find anywhere in a single source.

The Medifocus Guidebook on Scleroderma starts out with a detailed overview of the condition and quickly imparts fundamentally important information about scleroderma, including:

  • The underlying causes of scleroderma.
  • The risk factors that can increase a person's chances for developing scleroderma.
  • A detailed overview of the two major types of scleroderma that are recognized, known as localized scleroderma and systemic scleroderma.
  • The signs and symptoms that are associated with both localized and systemic scleroderma.
  • The secondary complications that may develop in people with systemic scleroderma, including:

    • Pulmonary (lung) complications
    • Cardiac (heart) complications
    • Renal (kidney) complications
    • Gastrointestinal complications
    • Vascular complications
    • Oral and dental complications
  • How scleroderma is diagnosed based on factors such as signs/symptoms, patient history, physical examination, blood tests, and special diagnostic procedures that may be necessary to demonstrate damage to specific organs in people with systemic scleroderma.

  • Other underlying medical conditions that may be confused with scleroderma and must be considered in the differential diagnosis of scleroderma.

Understanding the Standard Treatments... and the Treatment Options

Currently, there is no known cure for scleroderma. The primary goals of treatment for people with scleroderma are as follows:

  • Relieve symptoms to the greatest extent possible.
  • Maintain the patient's overall functional capacity.
  • Prevent long-term complications of scleroderma.
  • Manage and treat complications, if they develop.
  • Enable patients to lead a reasonably good quality of life.

Understanding the standard treatments - and the treatment options - is critical for successfully achieving the goals of treatment for scleroderma. As you read through the section of the Guidebook that focuses on the treatments for scleroderma, you will specifically learn about:

  • The treatment options that are currently available for the management and treatment of localized scleroderma, including:

    • Psoralen photochemotherapy (PUVA)
    • Topical photodynamic therapy
    • Drug therapy
  • The medications that are prescribed for the management and treatment of systemic sclerosis, including:

    • Immunosuppressive agents
    • Antifibrotic agents
    • Anti-infammatory agents
    • Vasodilator agents
    • Angiotensin-converting enzyme (ACE) inhibitors
  • The management and treatment of secondary complications that may develop in people with scleroderma, including:

    • Pulmonary fibrosis
    • Pulmonary hypertension
    • Raynaud's phenomenon
    • Heartburn
    • Joint pain
    • Limb contracture due to stiffness
    • Impaired kidney function
    • Dry mouth and dry eyes in people with scleroderma who also suffer with Sjogren's syndrome
  • A detailed overview of new treatments that are currently under investigation for the treatment of systemic sclerosis, including:

    • Interferons
    • Tumor necrosis factor alpha blockers
    • Halofuginone
    • Plasmapheresis
    • Photopheresis
    • Autologous stem cell transplantation
  • The prognosis (outlook) for people with scleroderma and the important factors that have a significant impact in predicting the overall chances of recovery.

  • Quality of life issues that often confront people with scleroderma and how to minimize their impact and cope better with these issues.
  • Important questions to ask your doctor about scleroderma.

A "One-of-a-Kind" Reference Guidebook on Scleroderma that Goes Way Beyond the Fundamentals

Since 1996, when Medifocus was founded, we've learned that many people with Scleroderma are seeking more specific information that goes beyond the fundamentals, such as the causes, diagnosis, standard treatments, and treatment options. That's why we developed a "one-of-a-kind" reference Guidebook that goes way beyond the basics and also includes the following sections:

  • A Guide to Recent Medical Literature on Scleroderma - This section of the Guidebook contains an extensive bibliography of over 100 references to recently published articles about Scleroderma in authoritative, peer-reviewed medical journals with links to the absracts (summaries) of the articles. These articles represent the latest advances in the field and focus on cutting-edge research, new developments, and the lessons learned from recently published clinical trials involving patients with Scleroderma. This is the same level of that is used by doctors who treat people with Scleroderma to keep abreast of the latest developments and breakthroughs in this specialized field of medicine.

  • Centers of Research for Scleroderma - We've compiled a unique directory of doctors, hospitals, medical centers, and research institutions with special interest and, in many cases, clinical expertise in managing people with Scleroderma. The "Centers of Research" directory is a valuable resource for quickly identifying and locating leading medical authorities and medical institutions both within the United States and other countries who are considered to be at the forefront in clinical research and treatment of Scleroderma. You'd have to spend days - or even weeks - attempting to compile your own list of doctors and medical centers but, with the "Centers of Research" directory, the information is already right at your fingertips. All you have to do is act on the information by selecting and contacting the experts or medical institutions listed in the directory by state and country.

  • Organizations and Support Groups for Scleroderma - The Guidebook also includes a directory of organizations and support groups whose goal is to help people with Scleroderma by providing access to information, resources, and services. Many of these organizations can answer your specific questions, enable you to "network" with other patients, and provide guidance in areas such as financial, social, or medical-legal issues. This valuable directory of organizations and support groups includes complete contact information, including phone numbers and E-mail addresses.

Look Inside the Guidebook

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  • Free Updates for One Year - Along with your initial purchase of the Guidebook, you also receive free updates for one-full year.

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  • Risk-Free Satisfaction Guarantee - Your purchase comes with our RISK-FREE satisfaction guarantee. If, for whatever reason, you are not totally satisfied with the content of your Guidebook, simply contact us within 30-days of your purchase for a prompt, full refund. We are so confident that you will be satisfied with your Guidebook that we offer this RISK-FREE satisfaction guarantee unconditionally - no questions and no hassles.

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The Medifocus Guidebook on Scleroderma (208 pages; last updated July 6, 2018) is available in the following two convenient formats:

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Medifocus Guidebook on Scleroderma

Updated: July 6, 2018
208 Pages

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What Our Customers Are Saying...

"I found the MediFocus Guidebook on Scleroderma to be very comprehensive and easy to read. While it covers the "basics" of the disease that all patients need to know, it also provides more advanced information about the latest research and scientific advances. In a nutshell, the Scleroderma Guidebook is a tremendous resource for anyone who wants to become more educated about this autoimmune disorder and gain a clearer understanding of the medical issues."
Danville, Virginia

"The MediFocus Guidebook on Scleroderma provides a vast amount of important, practical information about this condition that is supported by an extensive list of references from reputable medical sources. The Guidebook not only has helped to answer many of my questions but has also given me the confidence to discuss my treatment options with my Rheumatologist in far greater detail than I could have done before reading the book. Thank you for providing this valuable Guidebook."
South Bend, Indiana

"The MediFocus Guidebook on Scleroderma helped me to understand my condition. In South Africa there is no support network for Scleroderma so your updates on new treatments will benefit me in educating myself to manage my disease. Thank you."
Eastern Cape, South Africa

Medifocus Guidebook on Scleroderma

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