| Welcome to the International Scleroderma Network |
| We'll help you find comfort and information. |
| We are a major, worldwide resource for scleroderma and related illnesses, with over 2,000 pages of quality medical and support information, in more than 20 languages. |
| SITE TOUR |
| There are only a few dozen scleroderma treatments centers in the world. A scleroderma specialist with the Scleroderma Clinical Trials Consortium (SCTC) can work with your local doctors, and give you access to participation in clinical trials, too. |
| Overview of Scleroderma |
| There are two main Types of Scleroderma : Systemic, which can affect the skin, blood vessels, and internal organs, and Localized (such as Morphea and Linear) which affect only the skin. |
| 1. Systemic Sclerosis ("scl") |
| Systemic Sclerosis ("scl") is a rare, chronic autoimmune (arthritis) disease that primarily affects females who are 30 to 50 years old at onset. It is a serious illness that can affect any part of the body. It is broken down into categories such as Diffuse, Limited, CREST, and Overlap. |
| This type is often referred to as the "disease that turns people into stone" for the distinctive skin hardening that often occurs eventually. The hardening typically affects the hands, causing the fingers to curl inward. |
| There are dozens of symptoms of Systemic Sclerosis, and a huge variance in how people are affected by it. Often the illness develops slowly, with vague initial symptoms such as swelling of the hands, carpal tunnel syndrome, sensitivity to cold, fatigue, heartburn, difficulty swallowing, shortness of breath, and reduced endurance. |
| Scleroderma can be quite difficult to diagnose, and many people are misdiagnosed with CFS, lupus, or rheumatoid arthritis in the beginning. Many people with scleroderma may have comparatively mild symptoms for decades, while those with the rare form of rapid-onset Diffuse Scleroderma, may quickly suffer disability, disfigurement, and even death. |
| The cause of scleroderma remains largely unknown. It is not contagious or cancerous. You can't catch it by kissing, holding hands, sharing eating utensils, or through sexual intercourse. Only about 1-2% of cases are genetic. Sometimes scleroderma is caused by chemical or environmental exposures. |
| Unfortunately, there is no proven treatment or cure for any form of scleroderma. However, there are effective treatments for many of the symptoms, many experimental treatments and clinical trials, and plenty of ways to lessen symptoms and adapt to the illness. |
| 2. Localized Scleroderma (Morphea, Linear) |
| Localized Scleroderma forms are Morphea and Linear and they affect only the skin(and sometimes the underlying tissues) and not the internal organs. |
| Linear and Morphea do not develop into the systemic form of scleroderma, and they do not reduce one's life expectancy in any way. However, they are often disfiguring and sometimes disabling, especially when the underlying joints and muscles are severely affected. |
| Localized scleroderma often begins during childhood. Any form of scleroderma (either systemic or localized) that begins during childhood is called Juvenile Scleroderma. |
| Medical Information |
| Main Symptom Page for Systemic Scleroderma Symptoms |
| On our main Medical page you can find links such as What is Scleroderma?, Causes of Scleroderma, Symptoms, and Treatments. You can also learn about scleroderma-like illnesses, and dozens of other autoimmune diseases. |
| ISN's Voices of Scleroderma Book Series |
| Our Voices of Scleroderma book series is a compelling worldwide collection of stories of people affected by scleroderma and related illnesses, and by the doctors who care for them. The book series is created entirely by ISN volunteers and from the personal stories posted on the ISN's SCLERO.ORG website. The stories are supplemented by articles from world leaders in scleroderma research. |
| Sclero Forums Online Support Community | | Join our free Sclero Forums, to share support and information. You can participate in the forum by reading and posting messages and photos online. Our community is well-moderated by ISN Support Specialists who help members follow the Forum Guidelines which help to keep the list focused on providing support to people affected by scleroderma or related symptoms throughout the world. | |
| Scleroderma: Hope on the Horizon |
| Although there is no cure for scleroderma, we hold fast to hope by supporting international research for scleroderma. Begin your online journey by viewing Scleroderma: Hope on the Horizon. This short FLASH movie is based on a poem written by Fran Waranius, in praise scleroderma researchers and also of the wonderful SD World email support list. |
| Support |
| Worldwide Scleroderma Support Groups |
| Find a Scleroderma Support Group near you, anywhere from Australia to the United Kingdom. We offer to make and post a free web page for any scleroderma support group in the world. You can use this free service to start your own support group, or to promote an existing group. |
| Patient and Caregiver Stories |
Many people find comfort or inspiration from reading about how other patients, caregivers, and survivors have dealt with scleroderma. Our story collection features over 700 heartfelt, true stories from all around the world.
I would like to personally invite you to share your story with us. It's as easy as writing an email, with our easy Story Submission Form. This is a terrific way of giving support and encouragement to others and offers a timeless gift to all of us. |
| Scleroderma Sites to Surf! |
| If you have a scleroderma website, we invite you to join the free Scleroderma Webmaster's Association to publicize it worldwide as part of our very popular Scleroderma Sites to Surf program. |
| Warm Hugs |
Please let me know if we can ever be of more help to you, as you get settled into our wonderful and supportive online community.
Warm Hugs,
Shelley Ensz
Webmaster |
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