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äá ?è ?? (What is Scleroderma?)
àò ؾ ä ?. ? ò ã¡ òàŢä. ÁÚô¨À À¡÷ì¸×õ.
This page was written by Shelley Ensz, and has not yet been medically edited. See Disclaimer.
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What is Scleroderma?

äá- àè òò.
Books About Scleroderma

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Brochures About Scleroderma

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Types of Scleroderma

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Difficult Diagnosis

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Effects of Scleroderma

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Causes of Scleroderma

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Not Contagious or Cancerous

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Symptoms & Treatments

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Clinical Trials

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About Scleroderma

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Patient Stories
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audioäá à, 150,000 Ӿ 500,000 â, èà 30 Ӿ 50 ¾à àò â, 񼸡ä ö ?? àà. ?? 100,000 Ǣ 30 à ?è Ţòö, ? àǢ ?è Ţòö úè.

What is Scleroderma?

audioScleroderma is a rare, chronic autoimmune disease which afflicts an estimated 150,000(1) to 500,000(2) Americans, primarily females who are 30 to 50 years old at onset. The overall occurrence is 30 people per 100,000 and the ratio of women to men is about four to one.

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à PDF ò . äǢ äź áá ã'-?(Adobe Reader) ŢԼ?, 째ò à ?ö. ò ?à? Ǣ ö à?, à à ¡Ţ, ã'- (?Adobe Reader) ?? ??ä ö.

Scleroderma Brochure(PDF à) Šì¦Ä§Ã¡¼÷Á¡ (Šì¦Ä÷-µ-¼÷Á¡) ±‎ýÈ¡ø “«Øò¾Á¡‎É §¾¡ø” ±‎ýÚ ¦À¡Õû. ‏‏þó‎§¿¡ö ¸ñ¼Å÷¸ÙìÌ §¾¡ø ‏‏þÚì¸õ ÁüÚõ ¾ÊôÒ, ‏þÃò¾ ¿¡Çí¸ÙìÌ §º¾õ, ‏þýõ ÁüÚõ §¿¡ö ±¾¢÷ôÒ «¨ÁôÀ¢ø Á¡üÈí¸û ¬¸¢Â¨Å ¿¢¸ú¸¢‎‎ýÈÉ. À¢ÃÍÃò¾¢ø, Šì¦Ä§Ã¡¼÷Á¡-Å¢‎‎ý «È¢ÌÈ¢¸¨Çô ÀüȢ ÀðÊÂø ¯ûÇÐ! ŧ oslash; ¯ûÇÐ! ŧ äá ò

Brochures About Scleroderma

These brochures are in PDF format. The files will open automatically in Adobe Reader, which is a free program which is already installed on most computers. If you click on the file link and it doesn't open, download Adobe Reader here.

Scleroderma BrochureWhat in the world is Scleroderma? (PDF Brochure) Scleroderma (sklare-oh-derma) means "hard skin." This complex disease involves tightening and thickening of the skin, blood vessel damage, inflammation and immune system changes. Brochure includes a systemic scleroderma symptom checklist! International Scleroderma Network..

äá- àè òò

äá ??à ¢ ?? ?? Ţ측 ?Ţ è, ò ??? ..?-ɢ äáŢ? òòò à à àâШ öè. ?? ¡Ǣ, ù à¡ڧš, ò áö է àáà òòò à!

òòò ò äá öǢ?? Ψø, ¡ǢǢ? Ǽ츢. ¡Ǣ ¢?? àè Ţ츢 м?, äáŢ? èè è ¡ù Өè àè äɸ à è. à: äá òò츢.

Books About Scleroderma

But what is scleroderma really like?! To answer that, we strongly recommend the ISN's Voices of Scleroderma book series for top quality medical and support information. It receives rave reviews from patients, caregivers and doctors alike!

Articles by highly esteemed scleroderma experts are combined with true stories from patients and caregivers explaining their illness and sharing their ideas for coping with all types of scleroderma symptoms.

äá-Ţ ?? Ũ

äá ?? Ũà - ä? ? èà à̾¢ ?ھ (ä츨ä - localized), ä? àä à̾Ǣ ??ھ ( - systemic).

(systemic) Ũ¡ ä? à̾¢ ɡö ??èä (, ?ò , ä? ùò). ? " äá" ʷä(diffuse), ä(limited), Ê(CREST) ä(overlap) àǡ èàθè.

ä츨ä Ũ¡ à¡(morphea) äɢ(linear) à, ? ä? ( ?? ¢ ) à̾¢ à; ɡ ɡ ä? ùòù àà, ä ? ä ̨èŧ à.

̨ù à äá à äá àθè.

Ţ è, äá-Ţ?? Ũ àò à.

Types of Scleroderma

There are two main types of scleroderma, localized and systemic.

The systemic forms can affect any part of the body (skin, blood vessels, and internal organs.) The systemic forms are also referred to as "systemic sclerosis" plus other terms such as diffuse, limited, CREST, and overlap.

The localized forms are morphea and linear. They affect only the skin (and sometimes the underlying tissues) but do not affect the internal organs, or reduce one's life expectancy in any way.

When any form of scleroderma (either localized or systemic) occurs in children, it is also called Childhood Scleroderma or Juvenile Scleroderma.

See Types of Scleroderma page for further explanation.

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äá â ¡, ä òù째 àâ ¡ ?à, è äм?, ? 츢è. à Ǣ ? ä (òʊ) à??è ä ??òò ö ò츢è.

ààö, èž ?, è ɿä š àà, ?? àò ž ù à ò ?¢? ??è 󧿡¡Ǣ.(4)

¢à ??àθ - À̾¢¨Âô À¡÷ì¸×õ.

Difficult Diagnosis

Proper diagnosis of scleroderma is often long and difficult, since it is a rare disease which few doctors are well-versed in, and in the early stages it may resemble many other connective tissue diseases, such as systemic lupus erythematosus, polymyositis, and rheumatoid arthritis, just to name a few.

Often the diagnostic uncertainty and frustration takes a huge toll on the psychological well-being of these patients, who describe their journey to diagnosis as being by far the most difficult part of their illness.(4) See Difficult Diagnosis.

Effects of Systemic Scleroderma

äá äö, ä?? ùòǢö Ǣ ä ţ(fibrosis) àòиè. ?? Ţš àà ö, ò ?ڸ àž, ?󧿡ö "ɢ ä ö" ??? àä èàθè.

Effects of Systemic Scleroderma

The systemic forms of scleroderma cause fibrosis (scar tissue) to be formed in the skin and/or internal organs. The fibrosis eventually causes the involved skin or organs to harden, which is why scleroderma is popularly known as the "disease that turns people into stone."

äá-Ţ? ä측ý

äá ö àž ä측ý ? èàŢä. ä Ũ¡ ö Åò ̾ ý ?ä ? ààθè. à ä Ê ¨ ý ä ?? վàθè. äá-Ţ? ä측ý - À̾¢¨Âô À¡÷ì¸×õ.

Causes of Scleroderma

The cause of scleroderma is unknown. Some cases of scleroderma have been linked to chemical exposures. Genetics, fetal cells, and viruses might also be factors in the development of scleroderma. See Causes of Scleroderma.

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äá ڧö(1) ä, , ? öž äš, àà? äš, òž? äš, öè ž?? äš, ?ò àš, ¡Ǣ à à?àò àò à?àòžä, ä š¢ä ?, äš àžä. ?󧿡ö òڧö ä.

Scleroderma is Not Contagious or Cancerous

Scleroderma is not classified as contagious (1), which means that you cannot get scleroderma by shaking hands, hugging, kissing, sexual contact, contact with blood or bodily fluids, sharing eating utensils, or by airborne contact from coughing or sneezing. And it is not cancerous in any way.(1)

äá - èèù  Өèù

??è äò, äá ̽àòž иǡ,  Өèǡ ?ä. ɡ, ?󧿡¢? èè ̽àòž è  Өè àä . Ũäòò èàà ¢? èèǢ àä, (systemic) äá-Ţ? èè . äáŢ? èè ò áö à̾ à. "äá ?è ??" ?è àòö, äáŢ? èèǢ?? à¨ä à. ? PDF-ò .

äáŢ èè(link) ò áö(link) à̾ à.

Scleroderma Symptoms and Treatments

At present, there are no proven treatments or cure for any forms of scleroderma. However, there are effective therapies for many of the symptoms. Most of the symptoms listed in this website are those of systemic scleroderma. See Systemic Scleroderma Symptoms and Scleroderma Treatments and Clinical Trials. Also see the Systemic Scleroderma Symptom Checklist in our free PDF from the ISN's "What is Scleroderma?" brochure.

äá - àâɸ

äá-Ţ? 측 àâɸ ä, à쨸ä Ũ¢ . ?? Өè(BMT)'- . àâɸ - À̾¢¨Âô À¡÷ì¸×õ.

Scleroderma Clinical Trials

There are some experimental therapies which show promise for treatment of scleroderma, including Stem Cell Transfusion (BMT). See Clinical Trials.

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äá- àè à NIAMS

äá - 񧽡 MayoClinic.com

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äá ?è ?? ä ò (â측)

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Information about Scleroderma

Handout on Health: Scleroderma NIAMS

Overview of Scleroderma MayoClinic.com

Voices of Scleroderma Volume 1 Book offers medical information about scleroderma by leading experts. Includes scleroderma symptom checklist, plus 100 personal stories of people living with scleroderma and related illnesses. International Scleroderma Network

What is Scleroderma? "Imagine for me if you would that in certain areas of your body the skin has begun to thicken and harden. Then on top of this, you have a painful sensitivity to cold, frequent heartburn, stiff joints and various other internal problems." Amy (Daughter of a Systemic Sclerosis patient)

What is Scleroderma? MedicineNet

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Morphea Stories (Italiano)

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Scleroderma Patient Stories

Systemic Scleroderma:

CREST Stories

Diffuse Stories

Limited SD Stories

Overlap Patient Stories

Localized Scleroderma:

Linear Stories

Morphea Stories

Morphea Stories (Italiano)

Others

Difficult Diagnosis and Undiagnosed

Eosinophilic Fasciitis

Interstitial Cystitis

Sjögren's Syndrome

Banumathy Sridharan: ISN Tamil Translator

Scleroderma from A to Z: Kannada Version

ISN: Kannada by Kishori Mundargi

ISN: Tamil by Banumathy Sridharan

Aziz: Surviving Son of Gangrene Patient (India) What I am writing now is something even more horrible than what you might have read in a Stephen King's scariest of novels. My father died of gangrene…

Jonty: Son of Scleroderma Patient (Hyderabad, India) In 1997, I secured a seat in a medical college in Hyderabad and enrolled for the MBBS degree course. I then took my mother to meet Dr. Narasimhalu…

Kamlesh: Husband of Limited Scleroderma Patient (India) In a pulmonary function test, there was severe restriction and severe obstruction…

Kishori Mundargi, Kannada Translator

Madhu Bhatia: Morphea (Delhi, India) When will I get respite and correct diagnosis? Pain on the wound is excruciating. I am entangled in a web of doctors with no clear diagnosis…

Mani: Son of Systemic Scleroderma Patient (Hyderabad, India) My mother was always complaining of breathlessness, slight fever, and nails and fingers turning blue when exposed to cold air…

Pushpa: Scleroderma with Raynaud's (Bangalore, India) Around my 21st winter, the year of 1982 in Calcutta, India, is when I first noticed my nails and fingers were turning blue when exposed to the cold…

Seema: Progressive Systemic Sclerosis (India) Finally I came to know about Dr. V.R. Joshi, an internist who specialized in rheumatic diseases…

Sujatha: Diffuse Systemic Sclerosis (Bangalore, India) I am 36 years old and hail from Bangalore in the Southern State of Karnataka in India…

Go to Turkish Version
 
Most Recent Donors

Winn Schillberg
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!

In Loving Memory

Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.

 

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