ISN Donation and Order Form

ISN Donation and Order Form Systemic Scleroderma Symptoms We welcome members from all countries who are Please consult your doctor if you have two or more of interested in scleroderma or related illnesses. The the following symptoms, which are sometimes due to ISN is a registered nonprofit 501(C)(3). systemic sclerosis (scleroderma). Systemic scleroderma may disqualify a person for life and/or health insur-  ISN Comprehensive Fund, Tackles Scleroderma on ance in some countries. Sometimes certain lab work or all fronts! I am donating $ (U.S. funds) biopsy results may force an unwelcome diagnosis into for scleroderma research, support, education and the medical record. awareness. ww w .scle r o.org Circulation  ISN Scleroderma Research Fund. Enclosed is my  Swelling of hands, feet and/or face gift in the amount of $______for research only.  Raynaud’s: fingers and/or toes turn white or blue due to cold or stress What in the world is  My donation is in loving memory of:  Ulcers (sores) on fingertips or toes

Please send sympathy card to: Gastrointestinal  Difficulty swallowing Scleroderma?  Heartburn (reflux) ISN Voices of Scleroderma  Constipation, diarrhea, irritable bowel syndrome Books Prices include shipping and handling. Heart, Lungs, Kidneys  Volume 1, $14.99 (On Sale)  Shortness of breath  Volume 2,$14.99 (On Sale)  Pulmonary (lung) fibrosis  Volume 3, $14.99 (On Sale)  Aspiration pneumonia  Entire Set, Vol. 1 thru 3, $25.00 (On Sale)  Pulmonary hypertension  High blood pressure or kidney (renal) failure  Right-sided heart failure

Muscles & Tendons Name:______ Tendonitis, or carpal tunnel syndrome  Muscle aches, weakness, joint pain Address:______City: ______Excessive Dryness or Sjogren’s Syndrome  Excessive dryness of the mucus membranes (such State: Zip: as eyes, mouth, vagina), which is sometimes called Country: ______Sjogren’s Syndrome Phone: Skin Email:  Tight skin, often on hands or face  Calcinosis (calcium deposits) Total: $  Telangiectasia (red dots on the hands or face)  Mouth becomes smaller, lips develop deep grooves, eating and dental care become difficult

Please mail this form with payment Many of these symptoms can occur by themselves or (in U.S. funds only, please) made out to: can be due to other things. Symptoms such as heartburn, high blood pressure, constipation and muscle International Scleroderma Network aches are common in the general population. More 7455 France Ave So #266 unusual symptoms, such as pulmonary fibrosis or Edina, MN 55435 USA tight skin, may be more likely to lead to a diagnosis of systemic scleroderma.

© Copyright 2016 International Scleroderma Network Thank You! Brochure: What in the world is Scleroderma? Reorder Form: SD-02-EN. Version 07-29-2016 PDF. What is Scleroderma? Systemic Sclerosis Scleroderma (sklare-oh-derma) means Systemic sclerosis (SSc, scleroderma, SD) “hard skin.” This complex disease involves begins with Raynaud’s phenomenon—poor tightening and thickening of the skin, circulation in the fingers. Some people then blood vessel damage, inflammation and quickly progress to widespread tightening immune system changes. and thickening of their skin (diffuse scleroderma). In diffuse scleroderma, risk of Around 100,000 people in the United early development of organ involvement is States, mainly women ages 20-50, develop high. This disease impacts function, quality of the systemic form of the illness which also life, comfort, cosmetic appearance and involves the lungs, heart, kidney and survival. intestinal tract. Around half of the people with systemic scle- Around 200,000 people in the United rosis have a slower, more benign form of the disease. In limited scleroderma (sometimes States, half of whom are children, develop called CREST syndrome), skin thickening localized scleroderma. usually stays restricted to the fingers, hands and face. Organ involvement includes intes- The cause of scleroderma is unknown and tinal and lung, but is typically delayed until the effective treatments are lacking. For second decade of disease. systemic sclerosis, survival is related to how much organ damage each individual Systemic sclerosis is highly variable in pace patient has. Modern medicine has made of development and severity of organ dam- great strides in treating individual age. Many persons have very mild disease, complications. whereas others have rapidly progressive and overwhelming difficulties. No two people with Scleroderma Research scleroderma are alike, which makes studies of treatments difficult to interpret. Research is very active in many areas, including cause, the nature of the disease process, and attempts to develop Localized Scleroderma treatments. Funding for research is vitally Localized scleroderma means that the dis- important and derives from the federal ease is restricted to involvement of the skin government, phar- maceutical companies, only. The absence of organ involvement and from charitable donations. means that survival is normal.

Research has led to breakthroughs in treat- The most common form of localized scleroderma is morphea—irregularly shaped ment of lung and kidney problems, and patches of thickened skin. Localized sclero- survival is ever improving. derma can also occur as linear scleroderma where a line of disease involves an arm, a leg Medical science considers scleroderma or a side of the face. In children, the affected to be the prototype disease of scarring or part of the body does not grow evenly so fibrosis. A breakthrough in scleroderma withered arms, distorted faces or shortened would lead to new understanding of other legs affect appearance and function. scarring diseases such as liver cirrhosis, heart and kidney failure and lung diseases. ISN Offers Hope and wide scleroderma community. We Help offer to make and post free web pages for scleroderma organizations, support The nonprofit International Scleroderma groups, Network (ISN) offers hope and help to and research studies, in all countries those affected by scleroderma and related and languages. Join or support the ISN illnesses, as well as their caregivers and today! survivors.

ISN Scleroderma Research Fund The ISN Scleroderma Research Fund is geared towards finding the underlying causes and treatments for scleroderma and related symptoms.

ISN Support Services ♦ Our sclero.org web site offers over 5,000 pages of medical and support information, in over 22 languages. ♦ Online Sclero Forums message board and chats provide top-notch, well- moderated support, 24 hours a day. ♦ Toll Free Phone (U.S.): 1-800-564-7099. ♦ Email support: isn @ sclero.org

ISN Book Series We publish the highly acclaimed Voices of Scleroderma book series, with articles by world experts as well as stories from those affected by scleroderma throughout the world.

ISN Web Site Services We also network and empower our world-