61. Juvenile Scleroderma & Related Diseases...page 1 A parent to parent resource network. Covers exercise, online support, recommended books and personal Category Health Conditions and Diseases scleroderma......Juvenile scleroderma Related Diseases page 1 A Parent to - ParentResource Network. Juvenile scleroderma Related Diseases page 1. http://www.expage.com/jsdresources

A Parent - to - Parent Resource Network MAY 1 - 7 JUVENILE SCLERODERMA AWARENESS WEEK! RESOURCES ON THE WWW ACR - Find A Pediatric Rheumatologist Pediatric Rheumatology Page - Thomas J.A. Lehman, M.D. For Kids Now - Low Cost Insurance Social Security For Children American Academy of Dermatology - Kids' Connection American Academy of Pediatrics/Rheumatology Shriner's Hospitals for Children Journal of Rheumatology Pediatric Pain Psychosocial Risk Children With A Chronic Illness NIAMS - Pediatric Rheumatology Clinic Family Registry for Scleroderma Rheumatic Diseases New Core Center Kids with Arthritis Children's Health Research Clinical Trials IDEA 97 State Resource Sheets TRAVEL Angel Flight West Ronald MacDonald House Patient Travel.Org National Association of Hospital Hospitality Houses, Inc. ONLINE SUPPORT Juvenile Rheumatic Diseases Website WEBRINGS Juvenile Arthritis Kids Juvenile Rheumatic Diseases Children's Autoimmune Diseases Families with Chronic Illness Children Childhood Depression ORGANIZATIONS: JUVENILE RHEUMATIC DISEASES Juvenile Scleroderma Network, Inc

62. Juvenile Scleroderma Network Support group based in California. http://hometown.aol.com/outreachjsdn/myhomepage/business.html

63. Hardin MD : Scleroderma From the University of Iowa, the *best* lists of Internet sources inscleroderma. scleroderma. We scleroderma Pictures. Progressive http://www.lib.uiowa.edu/hardin/md/scleroderma.html

Scleroderma "We list the best sites that list the sites" Site Map Diseases Home Free journals ... Diseases 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 Allergies +Pictures Anemia +Pictures Autoimmune Diseases Celiac Disease +Pictures Endometriosis +Pictures Fibromyalgia Graves Disease +Pictures Lupus +Pictures Medical Pictures Psoriasis +Pictures Rheumatoid Arthritis Sjogrens Syndrome +Pictures Skin Pictures Vitiligo +Pictures Yeast Infection +Pictures A Hardin MD Focus Page Scleroderma Webmaster’s Association directory International Scleroderma Network Scleroderma links Mick Breske MEDLINE plus Scleroderma Symptoms / Diagnosis 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 Yahoo : Scleroderma LookSmart : Scleroderma NOAH: Scleroderma NY Online Access to Health ClinicalTrials.gov :

64. Esophagus: Scleroderma esophagus scleroderma. females (80%), 3555 y/o. decreased LES pressure,decreased peristalsis; smooth muscle atrophy +/- loose fibrosis; http://chorus.rad.mcw.edu/doc/00152.html

CHORUS Collaborative Hypertext of Radiology Esophagus Feedback Search esophagus: scleroderma females (80%), 35-55 y/o decreased LES pressure, decreased peristalsis smooth muscle atrophy +/- loose fibrosis dermatomyositis may include involvement of upper 1/3 (striated) dysphagia to solids > liquids ("steakhouse syndrome") wide-open LES or HH +/- basilar pulmonary fibrosis other GI sites a/w CREST syndrome Charles E. Kahn, Jr., MD - 2 February 1995 Last updated 14 March 2001 Medical College of Wisconsin

65. Scleroderma scleroderma. progressive systemic sclerosis (PSS) hypertrophy thenatrophy of collagen fibers; 46th decade, MF = 13. bones punctate http://chorus.rad.mcw.edu/doc/00831.html

CHORUS Collaborative Hypertext of Radiology Multisystem entities Feedback Search scleroderma progressive systemic sclerosis (PSS) hypertrophy then atrophy of collagen fibers 4-6th decade, M:F = 1:3 bones punctate soft tissue ca++ (finger tips, shoulder, hips) acro-osteolysis intercarpal joint space narrowing (late) chest evident in 10-25% pulmonary fibrosis with diffuse reticulate infiltrate predominantly in lower lungs GI esophageal dilation and aperistalsis hiatus hernia + GE reflux + esophagitis + distal esophageal stricture gastroparesis dilation and dysmotility of small bowel pseudosacculation and dysmotility of colon see: CREST syndrome Yong H. Hahn, MD - 2 February 1995 Last updated 14 March 2001 Medical College of Wisconsin

66. Sklerodermie Selbsthilfe Translate this page scleroderma Liga eV Startseite, Allerdings ist Sklerodermie noch unbekannter als selten.Dies zu ändern, hat sich die scleroderma Liga eV ua zum Ziel gesetzt. http://www.scleroliga.de/

Aktuelles Sklerodermie Adressen Glossar Buchtipps Scleroderma Liga Medizin. Beirat Regionalgruppen Infomaterial Termine Sponsoren Mitgliedschaft Postkarten Mitgliederbereich Impressum Kontakt Diese Seite weiterempfehlen die Sklerodermie Selbsthilfegruppe Sklerodermie Aktuelles 31.03.2003 00:44 - Forum 30.03.2003 20:37 - Vielleicht ein Forum? 29.03.2003 16:59 - sklerodermie 29.03.2003 15:47 - sklerodermie morphea 28.03.2003 06:18 - Unzustellbare Mail an olivia156@arcor.de Einladung zur Therapietagung Sklerodermie Evangelischen Gemeindehaus Renten wegen Erwerbsminderung und Alter Frau E. Richter, LVA Bayreuth Augen- und Mundtrockenheit bei Sklerodermie 10. Januar Sklerodermie – eine Haut wie Porzellan Sklerodermie, zu Deutsch "harte Haut", umfasst zwei Krankheitsbilder: Eine Form betrifft das Bindegewebe und innere Organe, die andere beschränkt sich auf die Haut. Über letztere, die so genannte zirkumskripte Sklerodermie , sprach die "Neue Apotheken Illustrierte / Gesundheit" mit Professor Dr. Christoph Luderschmidt aus München. Professor Dr. Christoph Luderschmidt ist Mitglied des medizinischen Beirates der Scleroderma Liga: Interview lesen 18. Dezember

67. EMedicine - Scleroderma : Article By Andrew S Koenig, DO scleroderma scleroderma is derived from the Greek words skleros (hard orindurated) and derma (skin). scleroderma. Last Updated January 9, 2002, http://www.emedicine.com/MED/topic2076.htm

(advertisement) Home Specialties CME PDA ... Patient Education Articles Images CME Patient Education Advanced Search Link to this site Back to: eMedicine Specialties Medicine, Ob/Gyn, Psychiatry, and Surgery Rheumatology Scleroderma Last Updated: January 9, 2002 Rate this Article Email to a Colleague Synonyms and related keywords: systemic sclerosis AUTHOR INFORMATION Section 1 of 11 Author Information Introduction Clinical Differentials ... Bibliography Author: Andrew S Koenig, DO , Rheumatology Attending, Department of Internal Medicine, Division of Rheumatology, Rancoccas Hospital Coauthor(s): Sergio Jimenez, MD , Vice-Chairman for Research, Director, Dorrance H Hamilton Professor Endowed Chair, Department of Medicine, Division of Rheumatology, University Hospital, Thomas Jefferson University Andrew S Koenig, DO, is a member of the following medical societies: American College of Physicians-American Society of Internal Medicine American College of Rheumatology , and American Osteopathic Association Editor(s): John Varga, MD

68. Vanessa's Story Vanessa, a twelve year old shares her story about having morphea and discoid lupus. http://www.expage.com/vanessasjsd

anessa's Story GET INTO THE LOOP. The loop represents the "Circle of Knowledge." Help increase awareness of Lupus by wearing THE LOOP. Hello my name is Vanessa. I am twelve years old. I have Morphea and Lupus. When I was eight years old my mom noticed that I had two little bumps on my cheeks. My mom thought they were just mosquito bites. Only one went away and the other one on my right cheek did not go away. My mom took me to see the doctor. The doctor gave me some ointment to put on my face, but it still didn't go away. My mom took me back about two months later to my doctor. My doctor then sent me to a Dermatologist. The Dermatologist decided to do a biopsy on my cheek. About a month later the Dermatologist diagnosed me with Discoid Lupus at the age of nine years old. The Dermatologist told me that I could not really be in the sun. I could but I would have to wear a lot of sunscreen, a hat and sunglasses. I'm not sure why my Dermatologist sent me to see a Pediatric Rheumatologist at Children's Hospital in Los Angeles. My Pediatric Rheumatologist seen a mark on my left thigh that looked like a bruise. But this bruise wouldn't go away and it didn't hurt. After the Pediatric Rheumatologist looked at my thigh he told my mom I had Morphea.

69. EMedicine - Scleroderma, Thoracic : Article By Tracy Elliot, MD scleroderma, Thoracic Systemic sclerosis is a multisystem disease of connectivetissue that is accompanied by vasculopathy. scleroderma, Thoracic. http://www.emedicine.com/radio/topic780.htm

(advertisement) Home Specialties CME PDA ... Patient Education Articles Images CME Patient Education Advanced Search Link to this site Back to: eMedicine Specialties Radiology Chest Scleroderma, Thoracic Last Updated: June 21, 2002 Rate this Article Email to a Colleague Synonyms and related keywords: progressive systemic sclerosis, PSS, scleroderma, SSc AUTHOR INFORMATION Section 1 of 8 Author Information Introduction Differentials X-ray ... Bibliography Author: Tracy Elliot, MD , Associate With Medical Imaging Consultants, Department of Radiology, University of Alberta Health Sciences Center Tracy Elliot, MD, is a member of the following medical societies: Alberta Medical Association , and American Roentgen Ray Society Editor(s): Judith K Amorosa, MD, FACR , Clinical Professor and Program Director, Department of Radiology, University of Medicine and Dentistry of New Jersey, Robert Wood Johnson Medical School; Consulting Staff, Department of Radiology, Robert Wood Johnson University Hospital; Bernard D Coombs, MBChB, PhD

70. Stephanie's Story A 16 year old tells her story about her life with this disease as well as Raynaud's. http://expage.com/StephaniesStory

Stephanie's Story iving My Life With Diffuse Scleroderma Hello, my name is Stephanie. I am 17 years old. I was diagnosed with Diffuse Scleroderma when I was around 4 years old. Some doctors think I had it before then. When I was first diagnosed I went through lots of tests. The only test I continue to do are Pulmonary Function Test (PFT), and blood tests. I get a PFT every couple of years to insure that my lung capacity is in normal range. The last couple of years I haven't had a problem with my JSD. But when I was first diagnosed I had stomach reflux problems and ulcers on my finger tips really bad. I took Regalin, Zantac, D-penicillian, and Propulsid. I have taken other medications, but those are the one I took when I was first diagnosed. For my ulcers at night I would put Neosporin and a band-aid over them. I have Raynaud's which affects me in the summer and winter. Summer is the worse because of the air-conditioner. I get very embarrassed when people see my hands and fingers turn colors such as blue, purple, red, or really white because they seem to make such a big deal over it. I usually either make something up to get them to not say anything about it or just act like I have no clue. I remember I told this girl that it was a new lotion I bought, and she believed me! So that was cool. The strange thing is, I was a figure skater for almost six years, and my hands and feet rarely affected me on the ice. I no longer skate because I am trying to get more involved with school activities and have more of a social life. Skating kept me very busy.

71. The Scleroderma Direction THE scleroderma DIRECTION WEBSITE. Has moved to. http//www.sclerodermaSupport.com.Click Here To Go To New Location. Don't forget to http://ps.superb.net/smessick/sddirection.html

THE SCLERODERMA DIRECTION WEBSITE Has moved to http://www.SclerodermaSupport.com Click Here To Go To New Location Don't forget to bookmark the new page when you get there! Be sure to update your bookmarks to reference to the new URL http://www.SclerodermaSupport.com

72. Welcome Our Scleroderma Site Finding information about scleroderman, Fibromyalgia, Arthritis and Lupus http://www.geocities.com/HotSprings/9671/

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73. BJ's Story: Growing Up With Juvenile Scleroderma A mom tells her son's story growing up with juvenile scleroderma since the age of 5 years old. http://www.sclerodermasupport.com/bj

BJ's Story Growing up with Juvenile Scleroderma My son, BJ, was not any different from any toddler until one day in pre-school the teacher reported to me that BJ was having difficulty cutting with scissors and with finger painting. I started to notice shortly after that he wasn't as active as other children, and he was not able to use his hands like other children. By this time BJ's right fingers were becoming a bit crooked. His pediatrician suspected it could possibly be arthritis. I thought to myself he really never complained of joint pain. Although, we do have strong family history of arthritis, but not in children. How could this be possible? His pediatrician sent us to see a pediatric rheumatologist. December 1995, the nightmare began for weeks trying to find out what was wrong with BJ. The pediatric rheumatologist ordered a number of blood tests every two weeks. BJ was so terrified of needles it took myself and my mom to hold him down. BJ would try to bite and fight us to get away. It broke my heart to see him this way. After the first blood test came back the pediatric rheumatologist wasn't sure what he had. He mentioned to me that BJ could have Juvenile Rheumatoid Arthritis (JRA), Lupus or Eosinophilic Leukemia. When I heard the word Leukemia I thought my son was going to die. I did not know what Lupus was at the time. And generally, when you think arthritis, you think elderly people get this, and not children. I had to wait a month to find out what my son had because the hospital lab kept losing his blood tests.

74. LeRoy's Scleroderma Article scleroderma by Carwile LeRoy, MD. In autoimmune forms of arthritis,Including scleroderma, this injury may be persistent and severe. http://www.geocities.com/HotSprings/3758/SDMAIN.htm

Scleroderma by Carwile LeRoy, M.D. Forms of the disease Cause Major organ involvement Diagnosis ... Progress in research Scleroderma (Greek for 'hard skin') is a chronic disease characterized by sclerosis ('hardening') and scarring of the skin and of certain internal organs. First described in a paper published in 1753 by Carlo Curzio In Naples, Italy, scleroderma has since come to be recognized as one of the more than 100 types of arthritis, distinguished from one another by their associated symptoms and physical signs and by diagnostic tests. Most of these forms of arthritis are associated with an imbalance In the body's immune system and are therefore classified as autoimmune diseases. The human immune system is composed of specialized cells (lymphocytes, monocytes) and molecules (antibodies, interleukins, interferons, and others). Their function is to ward off foreign substances by recognizing their foreignness, mounting a response, and destroying the substance, whether it be a bacteria or virus, a chemical agent, or a transplanted organ. When the immune system responds to and destroys substances that are not foreign but are a part of the body's own healthy tissues, the result is an autoimmune injury. In autoimmune forms of arthritis, Including scleroderma, this injury may be persistent and severe. Forms of the disease Cause What is known, however, is that several types of environmental and occupational exposure are associated with the scleroderma-like disease. Coal and gold miners exposed to silica, workers who use vibrating tools Jackhammer operators, loggers), factory workers exposed to vinyl chloride or trichloroethylenes, cancer patients treated with the drugs bleomycin or cisplatin, bone marrow recipients who develop chronic rejection reactions, and people who consumed a contaminated cooking oil in Spain in 1981individuals in all of these diverse groups have been known to develop a scleroderma-like illness. What these various exposures have in common is unknown, but it is known that the chemical agents cited above create toxic products of oxygen metabolism that injure cells and tissue.

75. Criselda's Story A personal page from a mom sharing her story about her daughter who has juvenile scleroderma. http://expage.com/CriseldasStory

riselda's Story My Little Girl, Criselda, Has Juvenile Scleroderma WE MUST ALL HANG IN THERE AND GIVE EACH OTHER SUPPORT!! Criselda was diagnosed in May 1999. She started with JSD in the middle of 1998. She had a swollen ankle that would not go away. Some bruising had started developing on the bottom of her foot. I took her to the doctor, and was told she had a stone bruise. She was given a medicine to reduce the pain and swelling. The swelling did come down, but it came back within a few days. So, I took her back to the doctors and once again they told me it was a stone bruise. I was told to keep giving her the medication. The medication wasn't working. By now the scar tissue was showing. Criselda had a little burn where the scar tissue was. The scar tisuue seemed to be getting bigger. I had mentioned to the doctor about this. He said the scar was stretching due to her growth. After taking Criselda to this doctor for four months and nothing was done to find out was wrong with Criseda's foot. I decided to take Criselda to another doctor. We found a new doctor who seemed to care. He didn't know what it was, but he was going to find out. Criselda had x-rays done on her foot. Nothing showed to be wrong. The doctor sent us to another doctor. A total of three doctors had seen Criselda throughout this time, and not one of them could figure out what was wrong. Criselda had started walking with the inside of her foot. She was sent to a bone specialist. They knew right away what she had. It had nothing to do with her bones. She had JSD. I had never heard such a word. I didn't know what to think. The doctor came back into the room to confirm his diagnoses as JSD. I remember just coming to a blank stage. I wanted to cry so bad, and I did everything I could to keep back the tears. I had to make myself strong for Criselda.

76. Francais Sitemap Help Q A Dictionary Contact Us Arthritis Canada What is scleroderma? The word scleroderma means 'hard skin.' scleroderma is acondition where the skin gets thick and hard. How common is scleroderma? http://www.arthritis.ca/types of arthritis/scleroderma/default.asp?s=1

77. Jemma's Story A mom from the United Kingdom shares her daughter's story fighting juvenile scleroderma. http://expage.com/JemmasStory

emma's Story y Little Angels Fight With Juvenile Scleroderma ADULTS AREN'T THE ONLY ONE WHO GET SCLERODERMA! Hello, my name is Marina. I live in a little village called Seascale, which is in the United Kingdom. My 10 year old daughter, Jemma, has Juvenile Scleroderma. Jemma's story started when she was only 2 1/2, one morning she woke up very cold and clammy and in a state of almost collapse. We sent for the doctor who immediately sent her to our local hospital. After many tests they could not find anything wrong with her except that her blood was full of anti-bodies. They sent her home saying that children often produce anti-bodies for no apparent reason! If I only knew then what I know now. A few months later we noticed a strange rash on her left shoulder. We took her to the doctor who diagnosed her with excema and gave us some cortisone cream. We decided not to as we felt that it was doing no good. Meanwhile we were attending, as outpatients, at our local hospital for check-ups. Jemma's right collar-bone which had been broken at some time, we have never found out what happened. The doctors said it could have easily happened in a fall she may have had while toddling. Which was more likely the case that it happened while she was being born, apparently that is very common in childbirth. By now almost half her arm was covered in these strange patches, some were white, some were blue and some were red. I told the doctor while he was looking at her collar-bone that I was very worried about Jemma's left arm. He looked at it and referred us on to a skin specialist in another hospital.

78. Francais Sitemap Help Q A Dictionary Contact Us Arthritis Canada scleroderma scleroderma The scleroderma Book A Guide for Patients and Families MaureenD. Mayes MD Oxford University Press, New York NY Book 1999 You can buy http://www.arthritis.ca/programs and resources/book store/scleroderma/default.as

79. Julie's Linear Scleroderma Page Read about a daughter's struggle with linear scleroderma and find out some of what this family has learned over the years about this illness and its possible treatments. http://www.geocities.com:80/Heartland/Park/8412/linearscleroderma.htm

He looked her over and couldn't figure out what it might be.  He referred us to a pediatrician who also didn't know what it was and referred us to a dermatologist.  Finally someone had an idea of what it was.   He said it looked like linear morphea Two weeks later we were at the clinic, with test results showing an elevated ANA in our hands, waiting for the news.  The rhuematologist we were about to see would be about as much of an expert as you could hope to find ,having treated dozens of children with various forms of scleroderma.  He confirmed linear scleroderma and I sighed a great sigh of relief.  He was a bit shocked by my reaction and admonished me by saying, "This is still a very serious disease".  I knew it was but I also knew that it wasn't life threatening and THAT was a relief. He guessed that it had been present for more than a year and, because it was actively spreading over joints which can cause contractures, he thought she should take methotrexate and prednisone.  They had been using these drugs with a lot of success for kids with JRA and they believed it would also be helpful for scleroderma.  I had done research on the possible treatments for this disease and knew that he might suggest these drugs but I also knew that they were very toxic and had significant side effects.  I told him I wasn't comfortable with using these drugs and I feared that she would pay the price when she grew up if I used them now.  He felt strongly that she should use them but that they were also experimenting with

80. SCLERODERMA RESOURCES VENEREOLOGY scleroderma RESOURCES. Disease; A page with scleroderma links;About scleroderma; ADA Disability Information; Adaption Tips For SD; http://www.edae.gr/scleroderma.html

HELLENIC ASSOCIATION DERMATOLOGY - VENEREOLOGY SCLERODERMA RESOURCES A Case of Bleomycin-induced Scleroderrna A page with great "News" links A page with information about Raynaud's Disease A page with Scleroderma links ... Abnormal IgG cardiolipin antibody titers in patients with Raynaud's phenomenon and/or related disorders: Prevalence and clinical significance Michel Vayssairat, MD, Nisen Abuaf, MD, Nathalie Baudot, MD, Antoine Deschamps, MD, and Jean Pierre Gaitz, MD -Journal of the American Academ of Dermatology, April 1998 volume 38 number 4 Alamo Chapter Support Group of San Antonio Alliance of Genetic Support Groups Alopecia alt.support.scleroderma Usenet newsgroup concerning scleroderma American Academy of Dermatologists American Association of Retired Persons American College of Rheumatology The American College of Rheumatology is an organization of physicians, health professionals, and scientists that serves its members through programs of education, research and advocacy that foster excellence in the care of people with arthritis, and rheumatic, and musculoskeletal diseases. For more information about the organization, including a membership application, see our general information. American Medical Association American Occupational Therapy Association Antibodies in Scleroderma Arthritis Foundation ... Association des Sclerodermiques de France `` La Sclérodermie est une maladie rare mais sérieuse, qui affecte essentiellement la peau, mais aussi, dans sa forme généralisée ou systémique ,les organes internes (rein, coeur, poumons, etc...) pouvant ainsi mettre en jeu le pronostic fonctionnel et vital du malade. Le terme «Sclérodermie» décrit assez bien en lui seul le principal signe ou symptôme de la maladie. Du grec «skleros» : dur et «derma» : peau, sclérodermie signifie donc «durcissement de la peau ».

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