1. Surviving Scleroderma - Scleroderma Support A dedicated scleroderma community since 1996. A huge resource for medical information, current news and online support Surviving scleroderma is an independent website devoted specifically to those with scleroderma, their families and caregivers http://www.sclerodermasupport.com/

Site Search SD Facts Educate yourself on scleroderma About SD Types of SD Cause of SD SD Diagnosis ... SD FAQ SD Info Related Helpful Resources SD Symptoms SD Involvement SD Treatment SD Studies ... Men get it too! Emotional Info: Anger Anxiety Depression Fatigue ... Sadness Coping Issues Coping Daily Handicap Parking Sexual Issues Sleep Difficulties Communication: Our Doctors Our Families Finding... Our Inner self Our Strengths Activities: Gift making ideas Journal Writing Our Store Books, Gift ideas and more About Us: Site C opyright Site Affiliation Finance Issues ... Privacy Issues Additional Info: Acknowledgement Be a Volunteer Contact Info by Sherry Messick Read Site Go To Top Return Home We Are All Beacons of Light For Each Other Oprah Winfrey Surviving Scleroderma is an independent website devoted specifically to those with scleroderma, their families and caregivers. Since 1996 our webmaster , site volunteers and caring participants of our interactive areas have remained dedicated to the mission of bringing scleroderma related medical information, current news and online support to the vast internet public. Scleroderma knows no boundaries we have friends all over the world. View a list of some of the countries our visitors are from. If we can be of assistance to you in any way please don't hesitate to

2. The Scleroderma Research Foundation Information about the organization, research, mailing list and resources. http://www.srfcure.org/

3. Scleroderma Foundation - Home Page The scleroderma Foundation is a national nonprofit health organization dedicated to a threefold mission of Support, Education, and Research to help fight this http://www.scleroderma.org/

Welcome! Sign Up for Our Free Email Newsletter! Search our site using keywords: Make This My Homepage Sign Up for Our Free Email Newsletter! Get Connected! Contact Us ... "Living Well with Scleroderma" video Buy 2003 National Conference Videotapes and Audiotapes. Membership dues are $25/year. Details Register now! Our National Conference Next Chat: Weds., June 9, 9:30 p.m. Eastern Time June 9 will be an Educational Chat. Speaker to be confirmed. Learn more about our twice-monthly online Chats, including a list of upcoming speakers. Participate in a Study Study Seeks Patients with Lung Fibrosis. More Study Seeks Patients with Digital Ulcers.

4. I HAVE SCLERODERMA Stories of real people who have scleroderma. Living and coping with scleroderma. A site by people with scleroderma, for people with scleroderma. Useful links and information. If you're interested http://www.ihavescleroderma.com/

Our stories: Form to submit story Art Contents Excuse me ... Links Post its Post it archives Kate's original Post its Who we are Privacy statement ... Translation New on our site... Diffuse stories: Karen This has been a long journey but for all the bad parts a lot of good has come out of it. Charlene My husband is my hero, he loves me and takes good care of me. Marina (corrected from "Rose") - She not only diagnoses my physical symptoms but she also approaches my condition holistically. Donna I was tired of being perceived as a hypochondriac, when I knew something was very wrong with my body. CREST/limited stories: Laura The doctors just looked at me with a look of disbelief. Morphea/linear stories Rojia When I was 15 I began to notice that new spots were appearing again... Hannah All I do is think about the future and what it holds for her and how people will treat her. Bobbi The skin was tight and it could not be pinched.

5. International Scleroderma Network A major worldwide resource for scleroderma medical and support information, with over 800 pages in 18 languages. International scleroderma Network. http://www.sclero.org/

ISN's Voices of Scleroderma Vol. 1 book is available through Booksurge (GU Books)! About the ISN Languages Medical Experts NEWSROOM Message Board Support Personal Stories SWA Sites to Surf! Support Groups Email ISN Corporate Donors Hope on the Horizon ISN Cafe Shops ... ISN Online Cafe Shop Help raise awareness with our scleroderma calendar, t-shirts, mugs, tote bags, cozy sweatshirts, and dozens of other gift items! We subscribe to the HONcode principles of the Health on the Net Foundation. Verify here. The International Scleroderma Network is a nonprofit agency. We welcome members and supporters from all countries! We will help you find the comfort and/or information you need for dealing with scleroderma or related illnesses. Please feel free to email the ISN for information or support. Warm Hugs, Shelley Ensz ISN President This site is updated daily. The International Scleroderma Network (ISN) Presents: This site is now available in 18 languages: Bahasa Malaysia Chinese Deutsche (German) English ... Turkish Site Index of English Pages: A B C D ... Y International Scleroderma Network (ISN) We network and empower our worldwide scleroderma community.

6. MedlinePlus: Scleroderma scleroderma Handout on Health scleroderma ( National Institute of Arthritis and Musculoskeletal and Skin NIH organization for research on scleroderma is the National Institute of Arthritis http://www.nlm.nih.gov/medlineplus/scleroderma.html

@import url(http://www.nlm.nih.gov/medlineplus/images/advanced.css); Skip navigation Other health topics: A B C D ... List of All Topics Scleroderma Contents of this page: From the NIH General/Overviews Diagnosis/Symptoms Research ... Children Search MEDLINE/PubMed for recent research articles on Scleroderma You may also be interested in these MedlinePlus related pages: Raynaud's Disease Immune System/AIDS Skin, Hair and Nails From the National Institutes of Health Handout on Health: Scleroderma (National Institute of Arthritis and Musculoskeletal and Skin Diseases) General/Overviews Scleroderma (American College of Rheumatology) Scleroderma (Mayo Foundation for Medical Education and Research) Clinical Trials ClinicalTrials.gov: Scleroderma, Localized (National Institutes of Health) ClinicalTrials.gov: Scleroderma, Systemic (National Institutes of Health) Diagnosis/Symptoms Antinuclear Antibody Test (American Association for Clinical Chemistry) Understanding Scleroderma: Diagnosis and Care (Scleroderma Research Foundation) Understanding Scleroderma: Symptoms (Scleroderma Research Foundation) Research Bosentan Effectively Treats Painful Ulcer Condition (American College of Rheumatology) Lung Transplants Might Be Effective for People with Scleroderma (American College of Rheumatology) Scleroderma and Kidney Disease (Arthritis Foundation) Specific Conditions/Aspects CREST Syndrome (Mayo Foundation for Medical Education and Research) Morphea (Mayo Foundation for Medical Education and Research) Understanding Scleroderma: Types (Scleroderma Research Foundation)

7. Raynauds & Scleroderma Association Information about the organization, contact information, publications and the latest research. http://www.raynauds.demon.co.uk/

8. Scleroderma / Family Village Library Who to Contact. Where to Go to Chat with Others. Learn More About It. Web Sites. Search Google for "scleroderma" Who to Contact. scleroderma Research Foundation (SRF) 2320 Bath Street, Suite 315. Santa Barbara, CA 93105. 800441-CURE (toll-free) http://www.familyvillage.wisc.edu/lib_scle.htm

Scleroderma Who to Contact Where to Go to Chat with Others Learn More About It Web Sites ... Search Google for "Scleroderma" Who to Contact Scleroderma Research Foundation (SRF) 2320 Bath Street, Suite 315 Santa Barbara, CA 93105 800-441-CURE (toll-free) 805-563-9133 (phone) Web: http://www.srfcure.org/ The Scleroderma Research Foundation exists as the only organization in the nation dedicated exclusively to finding a cure for this terrible disease. Through nationwide public awareness efforts and an innovative research approach that brings together the best of business, government, science and medicine, the Foundation has raised millions of dollars for critical disease research. The mission of the Scleroderma Research Foundation is to find a cure for scleroderma, a life-threatening and degenerative illness, by funding and facilitating the most promising, highest quality research and by placing the disease and the need for a cure in the public eye. Scleroderma Foundation 12 Kent Way, Suite 101 Byfield, MA 01922

9. Scleroderma Information and resources about scleroderma. scleroderma is an autoimmune disease whose name means "hard skin", indicative of the thickening of the skin which occurs Two types of scleroderma http://arthritis.about.com/cs/sclero

zJs=10 zJs=11 zJs=12 zJs=13 zc(5,'jsc',zJs,9999999,'') About Arthritis Scleroderma Home Essentials zau(256,152,145,'gob','http://z.about.com/5/ad/go.htm?gs='+gs,''); Learn the Basics Medications/Supplements Arthritis by Anatomy Assistive Devices ... Help zau(256,138,125,'el','http://z.about.com/0/ip/417/0.htm','');w(xb+xb); Stay Current Subscribe to the About Arthritis newsletter. zau(256,152,100,'hs','http://z.about.com/5/ad/hs.htm?zIhsid=00',''); Search Arthritis Scleroderma Scleroderma is an autoimmune disease whose name means "hard skin", indicative of the thickening of the skin which occurs from increased deposits of collagen. Two types of scleroderma exist, localized and systemic. Alphabetical Recent Up a category Scleroderma: Not A Single Disease Referred to often as a single disease, scleroderma is actually a symptom of a group of diseases complicated by the abnormal growth of connective tissue which supports the skin and internal organs. Learn about the different types of scleroderma. Scleroderma Webmaster's Association Scleroderma sites to surf! Scleroderma in Southie A study in South Boston is an attempt to find out some of the answers to why there is a "scleroderma cluster" there, from M. Kugler, About Guide to Rare Diseases.

10. Hardin MD : Scleroderma From the University of Iowa, the *best* lists of Internet sources in scleroderma. symptoms of scleroderma, schleroderma, scleroderma symtoms, scleroderma symptons, sclerederma, picture the disease scleroderma, picture of scleroderma skin, disease scleroderma http://www.lib.uiowa.edu/hardin/md/scleroderma.html

Scleroderma "We list the best sites that list the sites" Site Map Diseases Home Free Articles in PubMed Search Hardin MD See also: Home Skin Diseases Arthritis Womens Health All links on this page hand-checked Popular Women's Health Dermatology Nursing Pharm Infect Disease Acid Reflux +Pictures Allergies +Pictures Autoimmune Diseases Celiac Disease +Pictures Dermatomyositis +Pictures Ear, Nose, Throat +Pictures Eczema Pictures Fibromyalgia +Pictures Fifth Disease +Pictures Foot Problems Pictures Hair Loss +Pictures High Blood Pressure +Pictures Lupus +Pictures Lyme Disease Pictures Medical Pictures Nail Diseases ... Psoriasis +Pictures Rosacea Pictures Sarcoidosis +Pictures Sjogrens Syndrome +Pictures Skin Pictures Toenail Fungus Pictures ... Vitiligo +Pictures Yeast Infection +Pictures Scleroderma Pictures Scleroderma Symptoms Scleroderma links Mick Breske MEDLINE plus Scleroderma National Library of Medicine Open Directory Project : Health : ... : Musculoskeletal disorders : Connective tissue : Scleroderma (Other versions: Google AOL Scleroderma National Women's Health Information Center, Office on Women's Health, US Public Health Service

11. Handout On Health: Scleroderma En español. Health Information. Health Topics. Order Publications. Studies with Patients. Patient Research Registries. Outreach Programs. NIAMS Coalition Members. Health Topics. Publication Date July 2001. Handout on Health scleroderma This booklet is for people who have scleroderma, as well as for their family members, friends http://www.niams.nih.gov/hi/topics/scleroderma/scleroderma.htm

En español Health Information Health Topics Order Publications Studies with Patients Patient Research Registries ... NIAMS Coalition Members Health Topics Publication Date: July 2001 Handout on Health: Scleroderma This booklet is for people who have scleroderma, as well as for their family members, friends, and others who want to find out more about the disease. This booklet describes the different forms of scleroderma and provides information on their symptoms, diagnosis, and treatment, including what patients can do to help manage their disease and the problems associated with it. It also highlights current research efforts into the understanding and treatment of scleroderma, many of which are supported by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) and other components of the National Institutes of Health (NIH). If you have further questions after reading this booklet, you may wish to discuss them with your doctor. What Is Scleroderma?

12. Kids Get Scleroderma Too!!!!! A Message From Kathy If you are looking for emotional reassurance, look no further! You will find it here with the JSDN! Our http://www.jsdn.org/

A Message From Kathy... If you are looking for emotional reassurance, look no further! You will find it here with the JSDN! Our network is set in a positive environment. We are keeping our literature updated to ensure that families are provided with the best coverage on JSD. Most of all we know what every parent is going through having a child diagnosed with JSD. I have a son, BJ, who was diagnosed with JSD in August 1996. Living with JSD can be exhausting mentally and physically for both of us with trips to the pediatric rheumatologist, blood tests, PT/OT. Sometimes it is stressful just getting your child to take their medication. It is a helpless feeling not knowing what to do for your child. We are here to help you as much as we can for each and every one of you. We may not be close by, but we are a phone call or email away when you need us. Please feel free to call or email us at anytime to let us know what we can do for you. Our thoughts and prayers are with you and your family. Translate these pages now, for free! Go to:

13. International Scleroderma Network A major resource for medical and support information, with 200+ pages and 800+ links. Symptoms, treatments, clinical trials, and worldwide support group listings. http://www.sclero.org/index.html

ISN's Voices of Scleroderma Vol. 1 book is available through Booksurge (GU Books)! About the ISN Languages Medical Experts NEWSROOM Message Board Support Personal Stories SWA Sites to Surf! Support Groups Email ISN Corporate Donors Hope on the Horizon ISN Cafe Shops ... ISN Online Cafe Shop Help raise awareness with our scleroderma calendar, t-shirts, mugs, tote bags, cozy sweatshirts, and dozens of other gift items! We subscribe to the HONcode principles of the Health on the Net Foundation. Verify here. The International Scleroderma Network is a nonprofit agency. We welcome members and supporters from all countries! We will help you find the comfort and/or information you need for dealing with scleroderma or related illnesses. Please feel free to email the ISN for information or support. Warm Hugs, Shelley Ensz ISN President This site is updated daily. The International Scleroderma Network (ISN) Presents: This site is now available in 18 languages: Bahasa Malaysia Chinese Deutsche (German) English ... Turkish Site Index of English Pages: A B C D ... Y International Scleroderma Network (ISN) We network and empower our worldwide scleroderma community.

14. Scleraderma Lung Study A research study into the treatment of pulmonary alveolitis with cyclophosphamide seeking patient volunteers. Brief details of this US study for patients and doctors. (May 2000) http://sclerodermalungstudy.medsch.ucla.edu/

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15. Scleroderma Foundation - Research Grant Application Introduction Go to the scleroderma Foundation s home page. Click here to donate to the scleroderma Foundation.We are grateful for your taxdeductible http://www.scleroderma.org/research/researchhome.htm

We are grateful for your tax-deductible contribution to help fight scleroderma. Membership dues are $25/year. Details Introduction Research Objectives Grant Application ... Marta Marx Fund Introduction allotting over $1 million each year to find the cause and cure of scleroderma. Research News Scleroderma Foundation Announces $1.45 Million in New Research Grants for 2004! more Research Grants Awarded, 1989-2004. more The Challenge of Scleroderma Scleroderma, which literally means "hard skin," can cause thickening and tightening of the skin, as well as serious damage to internal organs including the lungs, heart, kidneys, esophagus, and gastrointestinal tract. It is often life-threatening. Scleroderma occurs three to four times more often in women than in men.

16. Pediatric Rheumatology Home Page A resource for families and physicians caring for children with arthritis, lupus, scleroderma, Kawasaki disease and other rheumatic diseases. http://www.goldscout.com/

id=13897 All information is provided as a public service and no warranty is expressed or implied. KEY WORDS: arthritis scleroderma childhood arthritis dermatomyositis JRA juvenile rheumatoid arthritis Kawasaki Disease pediatric rheumatology polyarteritis nodosa SLE systemic lupus erythematosus vasculitis CLICK for Patient and Family Information Information about juvenile rheumatoid arthritis More Information about childhood arthritis Information about systemic lupus ... Amazon.com It’s not just growing pains. A guide to childhood muscle, bone, and joint pain, rheumatic diseases and the latest treatments Dr. Tom Lehman’s experience and compassion are evident on every page of this book, and they help guide the reader—child, parent, and healthcare professional alike – through the world of childhood arthritis. This book is an absolute gem written with a single goal in mind: improve the lives of kids with arthritis. Jack Klippel , M.D. President and CEO of the Arthritis Foundation “Dr. Lehman has given parents and families of children with arthritis the first book that speaks to the parent and child as equals. His book explains the illnesses, the medications, the lab tests, and the disease course in simple, understandable lay language and givens them valuable insight into how a pediatric rheumatologist thinks.

17. Scleroderma Webmaster's Association Directory The scleroderma Webmaster s Association makes it easy for people to find scleroderma information on the Internet! International scleroderma Network. http://www.sclero.org/support/swa/a-to-z.html

ISN's Voices of Scleroderma Vol. 1 book is available through Booksurge (GU Books)! About the ISN Languages Medical Experts NEWSROOM Message Board Support Personal Stories SWA Sites to Surf! Support Groups Email ISN Corporate Donors Hope on the Horizon ISN Cafe Shops ... ISN Online Cafe Shop Help raise awareness with our scleroderma calendar, t-shirts, mugs, tote bags, cozy sweatshirts, and dozens of other gift items! We subscribe to the HONcode principles of the Health on the Net Foundation. Verify here. The International Scleroderma Network is a nonprofit agency. We welcome members and supporters from all countries! We will help you find the comfort and/or information you need for dealing with scleroderma or related illnesses. Please feel free to email the ISN for information or support. Warm Hugs, Shelley Ensz ISN President This site is updated daily. This site is now available in 18 languages: Bahasa Malaysia Chinese Deutsche (German) English ... Turkish Scleroderma Sites to Surf!

18. Scleroderma Clinical Trials Consortium Information about this international organization which is dedicated to finding a better treatment for this disorder. Includes current studies and a newsletter. http://www.sctc-online.org

Contact Welcome OMERACT 2004 May 12-16, 2004, at Asilomar Conference Grounds, Monterey Bay, CA What is OMERACT Are you a scleroderma patient looking for support and information? See our Links page The 8th International Workshop On Scleroderma Research Cambridge, England - August 1-4, 2004 SCTC Research Study Application (Word) Scleroderma Care and Research journal Contact webmaster with corrections. Last update - 2-1-2004

19. SRF | Understanding Scleroderma | Types Types. The many faces of scleroderma. Over 80% of scleroderma patients are women in the prime of their lives. Types and subtypes of scleroderma. http://www.srfcure.org/sclerod/types.html

Types Symptoms Diagnosis and Care Types The many faces of scleroderma Over 80% of scleroderma patients are women in the prime of their lives Types and sub-types of scleroderma Localized scleroderma Morphea Generalized morphea Linear scleroderma Systemic scleroderma Limited Diffuse Scleroderma sine sclerosis Localized Scleroderma The skin is usually the only organ involved in localized scleroderma. Because it does not affect other vital organs, this disease type is less serious than systemic scleroderma. It can, however, be disfiguring and sometimes painful. Localized scleroderma is classified into three main subtypes: Morphea Generalized morphea Linear - Considered a pediatric disease, linear scleroderma usually occurs in the first decade of life. A band or bands of skin become thick and tight on the trunk or extremities. In some cases it may extend deep into the tissue and down to the bone, causing an associated loss of deep tissue or bone structure and interfering with normal growth. When linear scleroderma occurs on the face, it is referred to as en coup de sabre Systemic Scleroderma Systemic scleroderma is a multi-system disease with multiple manifestations, two reasons the disease is so difficult to identify, treat, and cure. Characterized by vascular injury, inflammation, and fibrosis, systemic scleroderma can affect the skin, blood vessels, muscles, joints, gastrointestinal tract, kidneys, lungs, and the heart.

20. Edgar Cayce's Scleroderma Treatment: Case Studies Two case studies (one with morphea) demonstrating the efficacy of Edgar Cayce's approach to treating scleroderma. http://www.webspawner.com/users/sclerodermacases/

Edgar Cayce's Scleroderma Treatment: Case Studies CASE STUDY #1: MARGIE Summary A 13 year old girl suffering from scleroderma with morphea (lesions on the skin) achieved reduction of symptoms within one month of starting a therapy recommended by Edgar Cayce and continued gradual improvement during a three year follow-up period. Background Margie was a 13 year old girl who first came to the A.R.E. Clinic in October, 1980, with a diagnosis of scleroderma with morphea. Previous treatment by a dermatologist and family physician failed to provide results. Margie's parents were alarmed by the poor prognosis given for this progressively debilitating illnessan 80% chance of death within ten yearsand were anxious to find help for their daughter. Medical History In May, 1979, Margie's mother noticed a tiny spot on the skin overlying her upper breastbone. As it looked like ringworm, they applied some anti-fungal ointment and promptly forgot about it. In August, it was still present and had enlarged. Their family physician discovered a similar lesion on her back and agreed that it was fungal in origin. She did not respond to the medication he prescribed. Her hands became very sore, swollen, cracked, and bleeding. In September, he referred her to a dermatologist who biopsied the lesion on her back and diagnosed morphea. He told them "it wasn't leprosy and it wasn't cancer, but it wasn't something you'd want for Christmas either." He gave her a dry skin cream for her hands and recommended vitamin E to slow down the morphea. Margie began to feel sick, fatigued, and complained of headaches and backaches often. Both hands and feet became affected.

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