| Apakah itu Scleroderma? (Inggris: What is Scleroderma?) |
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| This page was written by Shelley Ensz, translated into Indonesian by Iona Carina, and has not yet been medically edited. See Disclaimer. | ||
| Apakah itu Scleroderma? | ||
 Scleroderma adalah penyakit langka kronis yang menyerang pertahanan tubuh. Saat ini diperkirakan sekitar 150,000(1) sampai 500,000(2) orang Amerika telah terjangkit penyakit ini. Terutama wanita berumur antara 30 sampai 50 tahun. Penyakit ini menjangkit 30 orang per 100.000 dan perbandingan antara wanita dan pria berkisar empat (4) banding satu (1). |
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| (Inggris/English) What is Scleroderma? | ||
| Scleroderma 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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| Buku-buku tentang Scleroderma | ||
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| (Inggris/English) Books About Scleroderma | ||
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| Brosur-brosur tentang Scleroderma | ||
| Brosur-brosur ini terdapat dalam format PDF yang dapat dibuka dengan program Adobe Reader. Program ini gratis dan umumnya telah terpasang di kebanyakan komputer. Jika brosur tidak terbuka, download Adobe Reader di sini. | ||
 (Bahasa Inggris) Apakah Scleroderma? (Brosur PDF) Scleroderma (sklare-oh-derma) artinya "kulit keras". Penyakit yang kompleks ini menyebabkan pengencangan dan penebalan kulit, kerusakan pembuluh darah, peradangan dan perubahan sistem kekebalan tubuh. Termasuk dalam brosur ini, urutan daftar gejala-gejala scleroderma. International Scleroderma Network. |
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| (Inggris/English) 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. | ||
| What 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. |
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| Macam-macam Scleroderma | ||
Ada dua jenis utama scleroderma, localized dan systemic. Scleroderma systemic dapat mempengaruhi seluruh bagian tubuh (kulit, pembuluh darah, dan organ bagian dalam). Jenis ini juga sering disebut sebagai "systemic sclerosis" dan istilah-istilah lain seperti diffuse, limited, CREST, dan overlap. Jenis localized itu morphea dan linear. Jenis ini hanya mempengaruhi kulit (dan kadang-kadang juga jaringan pokok) tetapi tidak mempengaruhi organ-organ bagian dalam, atau mengurangi harapan hidup seseorang. Penyakit scleroderma pada anak-anak (localized ataupun systemic) biasanya disebut sebagai Childhood Scleroderma atau Juvenile Scleroderma. Lihat halaman (Bahasa Inggris) Types of Scleroderma untuk penjelasan lebih lanjut. |
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| (Inggris/English) 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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| Kesukaran Diagnosis | ||
Sangat sulit untuk mendiagnosis scleroderma yang tepat, dan biasanya membutuhkan jangka waktu yang lama karena penyakit ini langka dan tidak banyak dokter yang benar-benar mengetahui tentang hal ini. Apalagi pada tingkat awal, penyakit ini dapat menyerupai penyakit-penyakit jaringan urat yang lain, contohnya systemic lupus erythematosus, polymyositis, dan rheumatoid arthritis. Seringkali ketidakpastian dari diagnosis dan frustasi menyebabkan banyak penderita yang mengalami gangguan psikologis. Mereka menggambarkan pengalaman mereka selama di-diagnosis sebagai masa-masa tersukar. (4) lihat (Bahasa Inggris) Difficult Diagnosis. |
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| (Inggris/English) 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. | ||
| Akibat Scleroderma | ||
| Jenis scleroderma systemic menyebabkan fibrosis (perusakan jaringan) terbentuk di kulit dan/atau organ-organ bagian dalam. Fibrosis ini pada akhirnya menyebabkan kulit atau organ yang bersangkutan mengeras. Karena itu scleroderma terkenal sebagai "penyakit yang mengubah orang menjadi batu". | ||
| (Inggris/English) 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." | ||
| Penyebab Scleroderma | ||
| Penyebab scleroderma masih belum diketahui. Beberapa kasus scleroderma dihubung-hubungkan dengan adanya reaksi bahan kimia. Unsur-unsur lain yang bisa menyebabkan terjadinya scleroderma adalah keturunan, sel-sel rahim, dan virus. Lihat (Bahasa Inggris) Causes of Scleroderma. | ||
| 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) | ||
| (Inggris/English) 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. | ||
| Tidak menular dan menyebabkan kanker | ||
| Scleroderma tidak digolongkan sebagai penyakit menular. Ini berarti anda tidak akan tertular ketika berjabatan tangan, berpelukan, berciuman, berhubungan badan, kontak dengan darah atau cairan-cairan tubuh, memakai peralatan makan yang sama, atau lewat udara ketika batuk atau bersin. Dan penyakit ini sama sekali tidak menyebabkan kanker. | ||
| (Inggris/English) 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) | ||
| Gejala-gejala dan Cara Pengobatan | ||
| Sampai saat ini, belum ada pengobatan atau perawatan yang telah terbukti menyembuhkan scleroderma. Bagaimanapun juga, ada beberapa terapi yang ampuh untuk menangani gejala-gejala scleroderma. Kebanyakan dari gejala yang terdaftar dalam situs ini adalah systemic scleroderma. Lihat Gejala-gejala Systemic Scleroderma dan S Perawatan Scleroderma dan Pemeriksaan Klinis. Lihat juga Systemic Scleroderma Symptom Checklist di brosur gratis PDF "(Bahasa Inggris/English) Apakah itu Scleroderma?" dari ISN. | ||
| (Inggris/English) 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. | ||
| Pemeriksaan Klinis Scleroderma | ||
| Ada beberapa percobaan terapi untuk scleroderma yang tampak menjanjikan, termasuk juga Stem Cell Transfusion (BMT). Lihat Pemeriksaan Klinis. | ||
| (Inggris/English) Scleroderma Clinical Trials | ||
| There are some experimental therapies which show promise for treatment of scleroderma, including Stem Cell Transfusion (BMT). See Clinical Trials. | ||
| Informasi tentang Scleroderma | ||
| Overview of Scleroderma. MayoClinic. | ||
| Paul Klee and Scleroderma, pelukis abstrak (1879-1940) ini barangkali penderita scleroderma yang paling terkenal. ISN. | ||
| Voices of Scleroderma Volume 1 Buku yang menawarkan informasi medis tentang scleroderma, ditulis oleh ahli-ahli terkemuka. Termasuk di dalamnya, daftar gejala-gejala scleroderma, ditambah dengan 100 pengalaman pribadi penderita scleroderma dan penyakit lain yang bersangkutan. International Scleroderma Network. | ||
| What is Scleroderma? "Bayangkan jika engkau mau, beberapa bagian tubuhmu mulai menebal dan mengeras. Dan terlebih lagi, engkau mempunyai kepekaan yang menyakitkan terhadap dingin, rasa panas dalam perut yang terjadi berulang kali, lipatan-lipatan kaku dan berbagai masalah dalam tubuh lainnya." Amy (Daughter of a Systemic Sclerosis patient) | ||
| What is Scleroderma? Arthritis Foundation (U.S.) | ||
| What is Scleroderma? MedicineNet | ||
| What is Scleroderma? "Terkadang Scleroderma susah untuk di-diagnosis. Ini dapat menyebabkan perubahan kulit secara perlahan atau kegagalan suatu organ. Gejala awal terdiri dari..." Scleroderma Society of Canada | ||
| (Inggris/English) Information about Scleroderma | ||
| Overview of Scleroderma MayoClinic. | ||
| The Scleroderma Book: A Guide for Patients and Families by Dr. Maureen Mayes | ||
| 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? Arthritis Foundation (U.S.) | ||
| What is Scleroderma? MedicineNet. | ||
| What is Scleroderma? "Scleroderma can be difficult to diagnose. There may be slowly evolving skin changes or malfunction of an organ. First symptoms may include..." Scleroderma Society of Canada. | ||
| Kisah-kisah Penderita Scleroderma (Inggris/English) Scleroderma Patient Stories |
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| Systemic Scleroderma: | ||
| CREST Stories | ||
| Diffuse Stories | ||
| Limited SD Stories | ||
| Overlap Patient Stories | ||
| Localized Scleroderma: | ||
| Linear Stories | ||
| Morphea Stories | ||
| Morphea Stories (Italiano) | ||
| Lain-lain (Others) | ||
| Difficult Diagnosis and Undiagnosed | ||
| Eosinophilic Fasciitis | ||
| Interstitial Cystitis | ||
| Sjögren's Syndrome |
 SCLERO.ORG |
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| Indonesian Version | ||||||||
| SWA Global Outreach Excellence Award to Iona Carina | ||||||||
 This award from the Scleroderma Webmaster's Association (SWA) was given to Iona Carina, ISN Indonesian Translator, for her excellent global outreach efforts. |
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| Go to (Italiano) Cos'è la Sclerodermia: Introduzione | ||||||||
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