61. Kids Get Scleroderma Too!!! scleroderma is a connective tissue disease involving skin, blood vessels and the scleroderma means hard skin . Thickening and tightening of the skin http://www.jsdn.org/whatisjsd.htm

Written by: Dr. Ronald Laxer Pediatric Rheumatologist The Hospital For Sick Children Toronto, Canada Dr. James R. Seibold Rheumotologist Rheumatology - Scleroderma Program New Brunswick, New Jersey Vanessa Malcarne, Ph.D Psychology Annex for Research and Training San Diego, California Kathy Gaither What is Juvenile Scleroderma? Scleroderma is a connective tissue disease involving skin, blood vessels and the immune system. In its systemic form, internal organ involvement can occur. Scleroderma means "hard skin". Thickening and tightening of the skin occurs from a buildup of *collagen and other natural skin proteins which in turn is thought to be driven by a local inflammatory/immune response. (*Collagen - a fibrous protein made by cells that provides the firmness in the skin, forms the lining of organs, and is the basic structural protein in bones, tendons, ligaments, and joints). There are a variety of distinct and separate syndromes that result in scleroderma. 1. Localized - not involving internal body systems. Localized is much more common in children than adults.

62. Scleroderma CHC Wausau Hospital s Medical Library and Patient Education Center providesresearch services and healthcare information to physicians, http://www.chclibrary.org/micromed/00064500.html

Main Search Index Definition Description Causes ... Resources Scleroderma Definition Scleroderma is a serious, progressive disease that affects the skin and connective tissue (including cartilage, bone, fat, and the tissue that supports the nerves and blood vessels throughout the body). Scleroderma is also frequently called systemic sclerosis. Description Connective tissue is found throughout the body. It is a fibrous tissue produced by special cells called fibroblasts. Many cells of the immune system exist within the connective tissue. Connective tissue supports all of the structures of the body, including the skin, the organs, and all of the body's blood vessels and nerves. Collagen is a type of protein fiber present in connective tissue. In scleroderma, collagen is over produced and is defective. Collagen then accumulates throughout the body, causing the hardening (sclerosis), scarring (fibrosis), and the damage characteristic of scleroderma. Because collagen is found so widely throughout the body, the effects of scleroderma are almost always widespread. Scleroderma occurs in all races of people all over the world. Patients are most often diagnosed between the ages of 30-50 years old. Women are three to four times more likely to suffer from the disorder. Young Afro-American women and Choctaw Native Americans have particularly high rates of the disease. Although some cases of scleroderma clearly run in families, most cases of scleroderma occur without any known family tendency for the disease.

63. Raynauds And Scleroderma Association http://www.raynauds.org.uk/

64. 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.

65. Scleroderma / Family Village Library The scleroderma Research Foundation exists as the only organization in the The mission of the scleroderma Research Foundation is to find a cure for 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

66. Index One person's battle with scleroderma, with information about the disorder. http://www.angelfire.com/fl2/scleroderma

setAdGroup('67.18.104.18'); var cm_role = "live" var cm_host = "angelfire.lycos.com" var cm_taxid = "/memberembedded" Search: Lycos Angelfire Dukes of Hazzard Share This Page Report Abuse Edit your Site ... Click here to tell someone about this site! SCLERODERMA GOD WILL PROTECT ME: Policemen came knocking on a mans door and told him, he must leave the area because the river was going to overflow its banks from rain. He said to policeman,"GOD will protect me". Then a man came by in a boat, told him to get in the boat, the man said "GOD will protect me". Water was now up to roof and a Army Reserves Helicopter came by and put a line down to him; told to climb up the line. He said " GOD will protect me". Well three days later he was in heaven in front of GOD. The man ask GOD, "why didn't you protect me". GOD said "what do you want , I sent a policeman , man in a boat, and helicopter to your house". Scleroderma My battle with Scleroderma Click HERE to vote for this page as a Starting Point Hot Site.

67. Scleroderma The Department of Medicine at the Penn State Milton S. Hershey Medical Centerand College of Medicine offers specialties and subspecialties in eleven http://www.hmc.psu.edu/rheumatology/aservices/scleroderma.htm

68. Across Scleroderma Bridges After six years with Diffuse Systemic Sclerosis, Fibromyalgia and Raynauds, Kim Trevathan Turner tells her story. http://hometown.aol.com/uncfan57/SclerodermaMain.html

htmlAdWH('93212816', '728', '90'); Main Scleroderma ..:::.. Across Scleroderma Bridges Diffuse Systemic Sclerosis Diffuse Systemic Sclerosis Diffuse Systemic Sclerosis Scleroderma Scleroderma Scleroderma Scleroderma WELCOME Come along and follow me to the other side of some of the bridges I have crossed in my battle against Scleroderma. I embarked on this unexpected and unpredictable journey in the Spring of 1998. At the age of 40, with a 7 year old daughter, ( who is now 13 and just happens to be the joy of my life ), and a 20 year marriage already in the "check out" line, I realized that I was in the battle of my life...and for my life. If you know much about Scleroderma, you know that there are several different forms of the disease, unfortunately, I have the Diffuse form, technically called "Diffuse Systemic Sclerosis". I have also been diagnosed with Raynaud's, Fibromyalgia, moderate Pulmonary Hypertension, GERD, Bursitis and Arthritis. You will hear more about these conditions in my "Bridge" segments. Currently, other than the normal pain and the constant struggle to stay warm, my focal point is a problem

69. Scleroderma Penn State Hershey Medical Center provides world class care and services to patients. http://www.hmc.psu.edu/healthinfo/s/scleroderma.htm

70. Scleroderma scleroderma Foundation. 12 Kent Way, Suite 101, Byfield, MA 01922. (978) 4635843or (800) 722-HOPE. Fax (978) 463-5809. http//www.scleroderma.org.. http://www.healthatoz.com/healthatoz/Atoz/ency/scleroderma.jsp

71. 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.

72. Localized Scleroderma Morphea scleroderma means hard skin and is pronounced sklero-derma. scleroderma is adisease that causes fibrosis (hardening) of the skin and sometimes the http://www.skinsite.com/info_scleroderma_localized.htm

Localized Scleroderma I. Definition: Scleroderma means "hard skin" and is pronounced skler-o-derma. Scleroderma is a disease that causes fibrosis (hardening) of the skin and sometimes the internal organs. Scleroderma can range from a form localized to the skin to a severe disease the effects the internal organs known as systemic scleroderma. Localized scleroderma can range from just a few spots on the skin to covering almost the entire skin surface. The skin lesions of localized scleroderma feel firm and hard. The color is ivory to yellowish in color. The skin lesions of localized scleroderma are usually seen on the trunk but can also occur on the face, arms, and legs. Localized scleroderma may last for a few months to many years. The condition is four times more common in women and usually starts between the ages of twenty and fifty. II. Cause: The cause of scleroderma is unknown. III. Treatment: There is not a known medication that will stop or reverse the process of scleroderma. Milder forms of scleroderma may be helped by topical cortisone medications or cortisone injections.

73. 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.

74. Dana's Story A story written by a mom regarding her 18 year old daughter's diffuse scleroderma. http://expage.com/DanasStory

Dana's Story The Wind Beneath My Wings "Go With All Your Heart" Dana was diagnosed with Systemic Scleroderma in September of 1993 when she was ten years old. She also has Raynaud's disease and living in New York City, she struggles with the cold. She has been able to obtain a disability-parking pass from the state and her college. Dana has had bouts with Alopecia Areata, and looses patches of scalp hair, eyelashes, and eyebrows from time to time. As her mother, I find this very hard to handle but she just combs her hair in another direction and goes on. The prognosis for this disease is very troubling but as we have learned, each person has a different set of symptoms. Dana has the support of a fine doctor, Dr. Thomas J.A. Lehman, at the Hospital for Special Surgery in New York City. She continues to take a scary combination of medicine. Dana is fine young woman now and we cannot predict what the future holds for her, or for any of us for that matter, but we know that she lives her life with all her heart. She is my hero, the wind beneath my wings. She makes her father and I proud as well as hopeful that soon we can find a way to stop this awful disease. Until then she knows the world what it means to "go with all your heart". For More Information on Juvenile Scleroderma: Juvenile Scleroderma Network, Inc

75. Systemic Sclerosis - Scleroderma The first detailed description of a sclerodermalike disease was published by Nearly 100 years later, in 1847 Gintrac introduced the term scleroderma, http://dermatology.cdlib.org/DOJvol8num1/reviews/scleroderma/haustein.html

DOJ Contents Systemic sclerosis - scleroderma U.-F. Haustein, MD Dermatology Online Journal 8(1): 3 Department of Dermatology, University of Leipzig, Germany Abstract Systemic sclerosis is a clinically heterogeneous, systemic disorder which affects the connective tissue of the skin, internal organs and the walls of blood vessels. It is characterized by alterations of the microvasculature, disturbances of the immune system and by massive deposition of collagen and other matrix substances in the connective tissue. This review discusses epidemiology and survival, clinical features including subsets and internal organ involvement, pathophysiology and genetics, microvasculature, immunobiology, fibroblasts and connective tissue metabolism and environmental factors. Early diagnosis and individually tailored therapy help to manage this disorder, which is treatable, but not curable. Therapy involves immunomodulation as well as the targeting of blood vessel mechanics and fibrosis. Physical therapy and psychotherapy are also important adjunctive therapies in this multifactorial disease. Introduction Systemic sclerosis (SSc) is a clinically heterogeneous generalized disorder which affects the connective tissue of the skin and internal organs such as gastrointestinal tract, lungs, heart and kidneys. It is characterized by alterations of the microvasculature, disturbances of the immune system and by massive deposition of collagen. The first detailed description of a scleroderma-like disease was published by Curzio in Naples in 1753.[

76. Scleroderma Support Groups Worldwide listings and online support resources. http://www.sclero.org/support/swa/listings/support-united-states.html

www.sclero.org So you'd like to learn more about scleroderma? an Amazon guide by Shelley Ensz, ISN President Our site menu requires pop-ups and javascript enabled. About the ISN Join/Donate Languages Medical Scleroderma Experts Symptoms Newsroom Message Board Support Stories Support Groups SWA Sites to Surf!

77. SCLERODERMA From GenadijS@aol.com I Have An 8 Yo This treatment has some rationale if you presume that scleroderma is essentially an Treatment of localised scleroderma with PUVA bath photochemotherapy. http://dermatology.cdlib.org/rxderm-archives/scleroderma

SCLERODERMA ================ From: GenadijS@aol.com I have an 8 y.o. WF pt. with a 1 year history of linear scleroderma of the right parietal scalp and right temple and forehead regions. The scalp plaques are yellowish, indurated, and devoid of hair follicles. The forehead and temple areas are beginning to get involved, with pallor mixed with slight erythema, and slight atrophy but no induration yet. There is no bony involvement and no soft tissue depression suggestive of Parry-Romberg Syndrome, and her eye is ok. She is otherwise well, with a normal sed rate and neg. ANA. I had her on Plaquenil for 4 months but during this time lesions progressed. She saw a Rheumatology consultant recently upon referral through the Scleroderma Foundation. He placed her on methotrexate instead. I had not found any reference to using methotrexate in this condition in my searches of the literature on Medline, or in any texts. I have used MTX in this age group before in one desperate case of severe psoriasis, but only for a few months. Please send your comments and/or suggestions. ================ From: "MARK NAYLOR" On 2/6/96 GenadijS@aol.com asked for treatment recommendations for en coup de sabre type linear scleroderma. Pardon the anecdotal nature of this response, but I recently had an excellent result in the treatment of linear scleroderma of the forehead in a 16 y/o female with a 6-8 month history of a progressively enlarging lesion on the forehead who was almost certain to have a poor cosmetic outcome without therapy. I found a case series that used PUVA, (systemic psoralens) and after 15 treatments (the reference patients had around 20 or so treatments as I recall) her huge (3 cm) divot has not only stopped growing, it has actually shrunk to about 2 cm and is filling in enough that it is getting difficult to see (depth and diameter are both definitely and noticably reducing). This treatment has some rationale if you presume that scleroderma is essentially an autoimmune response and PUVA is wiping out immunocompetent cells in the dermis. Anyway it appears to have exceeded my fondest expectations in my series of one and might be worth a try in your patient, particularly if cosmetic outcome is important. Here is the original reference, by the way: 1. Kerscher M, Volkenandt M, Meurer M, et al.: Treatment of localised scleroderma with PUVA bath photochemotherapy. Lancet 343(8907):1233, 1994. Mark Naylor, M.D. =================== From: alson@hk.super.net (WONG) It is very interesting.I wonder if a topical psoralens would produce similar effect since it affects a localised area ,very few dermatologist in hong kong get hold of PUVA facilities. Alson Wong ============== From: Steve Feldman At the Photomedicine Society meeting, the same group also reported success with long wave UVA light without the psoralen for localized scleroderma. Steve Feldman ========================= From: KSmithDerm@aol.com Linear scleroderma has been reported with a Lyme-like organism - might be good to get a Bosma stain on a biopsy specimen. I've had several patients with morphea respond well to antibiotics - Minocin and Doryx were the best until Zithromax came along. Zithromax gives very high and persistent tissue levels, but you still need to Rx for about 6 months because the spirochetes divide rarely, and are only susceptible to Rx when they are dividing. Take photos - this will make it much easier to objectively assess response to Rx, and to encourage patient to persist with Rx. KC Smith MD FRCPC ======================= From: Gfweb@aol.com As far as I know there have been no North American cases of morphea that had demonstrable Borrelia. It seems that European morphea is different in this respect. Guy Webster, MD, PhD From: Steve Feldman At the AAD poster session, another European morphea study and review of the literature said that only one of many PCR/morphea/Borrelia studies in Europe detected Borrelia in localized scleroderma. The author suggested that the one positive European report was an aberration and that their (European) morphea probably also has nothing to do with Borrelia. Steve Feldman, MD, PhD ======================= From: GenadijS@aol.com Thank you for the helpful input. Borrelia titers were negative, but a biopsy was not performed. Would you suggest biopsy of the areas of established sclerosis in the scalp, or the evolving areas of pallor and faint erythema on the lateral forehead and temple? I would assume that the latter would be more likely to reveal organisms, although the overall histopathology might be less specific overall. ======================= From: drpuritz@li.net (Dr. Elliott Puritz) Is a biopsy needed? An interesting point that you suggest is that organisms might be present with a negative Borrelia titer. If you strongly suspect Borreliosis, why not simply treat with adequate doses of Doxycycline or an alternative drug and observe the response? Elliot Puritz ================= From: KSmithDerm@aol.com I would biopsy the erythematous or violaceous border, and have it stained using the Bosma modification of the Steiner silver stain. Borrelia titres are pretty useless, and I think that the Borrelia in these cases will turn out to be someting other than Borrelia burgdorferi. Kevin C. Smith, MD, FRCPC ==================

78. Bay Area Scleroderma Support Group Includes information about meetings and events. http://www.bayareasclero.org/

Welcome to the website for the Bay Area Scleroderma Support Group! The Bay Area Scleroderma Support Group is a group of Scleroderma patients and caregivers that meets monthly at Kaiser Hospital, Niles West Building, 39400 Paseo Padre Parkway, Fremont, CA. (See Calendar of Events for specific dates and times.) Our meetings are typically attended by 20-30 individuals with a diversity of experiences and symptoms of the disease. We have both male and female patients including children and teenagers. Our meetings usually include times of fellowship and sharing, comparing of common experiences, and presentations on specific topics of common interest to the group. Whether you are newly diagnosed, have experienced the disease for some period of time, or are a concerned caregiver; you are encouraged and welcomed to attend and participate in our meeting. Click here to go to the main menu

79. Musculoskeletal Lab Perhaps best known is the systemic disorder, scleroderma, in which there may also be Facial sclerosis in a patient with systemic scleroderma. sclerosis http://www.pathology.vcu.edu/education/musculo/lab1c.html

Home About Us Site Directory Clinical Services ... Education Musculoskeletal and Skin Pathology for Medical II Students Lab 1c Scleroderma (03000-48210) Thickening or hardening of the skin can occur in a number of distinctive forms. Perhaps best known is the systemic disorder scleroderma , in which there may also be involvement of internal organs such as the heart and kidney. A subset of scleroderma, the CREST syndrome , features c alcinosis cutis, R aynaud's phenomenon, e sophageal dysmotility, s clerodactyly, and t elangiectases. Some characteristic antinuclear antibodies accompany these disorders. Less well known but probably much more common are the localized forms of scleroderma, also known as morphea . These present as firm, indurated plaques on the skin, often with a slightly dusky coloration or a "lilac-colored" border. Linear, deep-seated, and disseminated forms also occur. Slow resolution, sometimes with residual deformity, is the rule, but these patients typically do not have systemic abnormalities. Slide D7a Facial sclerosis in a patient with systemic scleroderma Slide D7b Isolated sclerotic plaque of morphea . This patient had no systemic manifestations of scleroderma. Slide D8 Low power view showing markedly thickened dermis with relative reduction in volume of subcutaneous fat.

80. Scleroderma World Email list dedicated to scleroderma and other auto-immune problems. http://www.sdworld.org/

SD World is a list dedicated to providing a place where those who suffer from Scleroderma and other autoimmune problems may gather in a warm, friendly forum for an upbeat, open and free exchange of thoughts, ideas and information. We also offer a section of links for scleroderma medical, support, health or fun information. Email List SD World is an email list dedicated to providing a place where those who suffer from Scleroderma and other autoimmune problems may gather in a warm, friendly forum for an upbeat, open and free exchange of thoughts, ideas and information. Click to subscribe SD Round the World SD Round the World These pages Links, Links, Links Links, Links, Links . Are you interested in more information? The internet is a really wonderful source. Here are some links to a few excellent medical and/or informational sites.

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