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Apakah itu Scleroderma? (Inggris: What is Scleroderma?)

Author: Shelley Ensz and Translator: Iona Carina. See Disclaimer.
Apakah itu Scleroderma?
—(Inggris) What is Scleroderma?

Buku-buku tentang Scleroderma
—(Inggris) Books

Brosur-brosur tentang Scleroderma
—(Inggris) Brochures

Macam-macam Scleroderma
—(Inggris) Types of Scleroderma

Kesukaran Diagnosis
—(Inggris) Difficult Diagnosis

Penyebab Scleroderma
—(Inggris) Causes of Scleroderma
Tidak menular dan menyebabkan kanker
—(Inggris) Not Contagious/Cancerous

Gejala-gejala dan Cara Pengobatan
—(Inggris) Symptoms & Treatments

Kisah-kisah Penderita Scleroderma
—(Inggris) Patient Stories

Referensi
—(Inggris) References

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).

(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.

Buku-buku tentang Scleroderma

Seperti apakah Scleroderma? Untuk menjawab pertanyaan seperti itu, kami sangat menganjurkan buku-buku dari ISN's Voices of Scleroderma book series untuk informasi medis terkemuka. Buku-buku ini telah menerima resensi dari para penderita, perawat, dan dokter!

Artikel-artikel yang ditulis oleh ahli-ahli terkemuka juga berisi tentang kisah-kisah nyata dari para penderita dan perawat yang menjelaskan tentang penyakit mereka dan mereka juga membagikan gagasan-gagasan untuk mengatasi gejala-gejala semua jenis scleroderma.

(Inggris/English) 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

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.

Scleroderma Brochure (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.

(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.

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.

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.

(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.

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.

(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)

(Inggris/English) Information about Scleroderma

Overview of Scleroderma MayoClinic.

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.

Kisah-kisah Penderita Scleroderma
(Inggris/English) Scleroderma Patient Stories

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

SWA Global Outreach Excellence Award to Iona Carina

SWA Global Outreach Excellence AwardThis award from the Scleroderma Webmaster's Association (SWA) was given to Iona Carina, ISN Indonesian Translator, for her excellent global outreach efforts.

(Italiano) Cos'è la Sclerodermia: Introduzione
 
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