欢迎你浏览硬皮病网页 "from
A to Z"。希望在浏览我们网页时 你能得到安慰并且从中获得你所需要的信息。
Thank you for visiting Scleroderma from
A to Z. We hope we can help you find the comfort and/or
information that you're seeking online.
This is a major, worldwide resource
for scleroderma, offering 800+ pages of medical and support
information, in 15 languages. Volunteers have
translated this site into Bahasa
Malaysia, Deutsche
(German), English, Español, Français, Greek, Hebrew, Italiano, Kannada, Magyarul
(Hungarian), Nederlands, Polski
(Polish), Português, Romana and Turkish.
这是一个以硬皮病为主的全世界的信息资源,用于网上医学和网上帮助服务,它用15
种语言供你选择,总共有 550 多页。
There are two main 硬皮病分型Types
of Scleroderma:
1) Systemic, which can affect the skin, blood
vessels, and internal
organs, and 2) Localized (such as Morphea and Linear)
which affect only the skin.
硬皮病主要有两种类型:
一是能够影响到皮肤、血管和内部组织器官的系统性硬化症,二是只影响皮肤的局限性硬皮病(硬斑病和带状硬皮病。
1. Systemic
Sclerosis ("scleroderma") is a rare,
chronic autoimmune (arthritis) disease that primarily
affects females who are 30 to 50 years old at onset.
It is a serious illness that can affect any part of
the body. It is broken down into categories such as Diffuse, Limited, CREST,
and Overlap.
1 系统性硬化症(scleroderma)临床上比较少见,是一种慢性自身性免疫性疾病(属于风湿性病一类),好发于岁到岁的女性。它能够能够影响到身体的各个部分,所以是很严重的疾病。分为弥漫性硬皮病、局限性硬皮病、
CREST综合症和复合型。
This type is often referred to as the "disease
that turns people into stone" for the
distinctive skin hardening that often occurs eventually.
The hardening typically affects the hands, causing
the fingers to curl inwards.
这种类型就是西方人常指的"disease that
turns people into stone" (“能把人变成石头的疾病”),这句话很好地形容了在它后期皮肤硬化所出现的变化。到这个时期,如果手受到影响,它最典型的表现是手指向内弯曲。
There are dozens of symptoms of
Systemic Sclerosis, and a huge variance in how people are
affected by it. Often the illness develops slowly, with
vague initial symptoms such as swelling of the hands, carpal
tunnel syndrome, sensitivity
to cold, fatigue, heartburn, difficulty
swallowing, shortness
of breath, and reduced endurance.
系统性硬皮病有许多种症状,在不同的人身上表现则有所不同。硬皮病通常发展缓慢,伴随着不明原因的始发症状,如手部水肿,碗管综合症,对冷敏感,容易疲劳,心痛,吞咽困难,呼吸急促和身体耐受力的减退。
Scleroderma can be quite difficult
to diagnose, and many people are misdiagnosed with
CFS, lupus, or rheumatoid arthritis in the beginning.
Many people with scleroderma may have comparatively mild
symptoms for decades, while those with the rare form
of rapid-onset Diffuse
Scleroderma, may quickly suffer disability, disfigurement,
and even death.
硬皮病很难确诊,许多人在开始时误诊为CFS综合症、红斑狼疮,或风湿性关节炎。许多人可以是几十年症状轻微。而那些患有弥漫性硬皮病的患者则发病较快,能够很快导致残废、功能缺陷甚至死亡,但患这种类型的硬皮病的人很少。
The Cause
of Scleroderma remains largely unknown. It is not
contagious or cancerous. You can't catch it by kissing,
holding hands, sharing eating utensils, or through sexual
intercourse. Only about 1-2% of cases are genetic. Sometimes
scleroderma is caused by chemical or environmental exposures.
硬皮病的发生原因很大方面还不是十分清楚。它不会结肠传染,也不象癌症那样传播。接吻、握手、共用餐具、性交都不会引起传染。只有的病例是和遗传原因有关。有些硬皮病可以由化学因素或环境因素造成的。
Unfortunately, there is no proven treatment
or cure for any form of scleroderma. However, there are
effective treatments for many of the symptoms, many experimental
treatments and clinical trials, and plenty of ways
to lessen symptoms and
adapt to the illness.
很遗憾的是,至今为止还没有有效的治疗方法来治愈硬皮病。但有许多种治疗方法可以改善和缓解它的症状。还有许多有关的试验性治疗和临床试验在进行当中。
2. Localized Scleroderma forms
are Morphea and Linear and
they affect only the skin (and sometimes
the underlying tissues) and not the internal organs. Linear
and Morphea do not develop into the systemic form of scleroderma,
and they do not reduce one's life expectancy in any way.
However, they are often disfiguring and sometimes disabling,
especially when the underlying joints and muscles are severely
affected.
局限性硬皮病的类型分局限性和线性两种,它们都只影响皮肤(有时会牵涉到下面的组织),不会牵累到各个脏器。线形和局限性硬皮病不会发展到系统性硬皮病,所以不会致命。但是,它们常常损伤肌肤外貌,有时还造成畸形,特别是当皮肤下的关节和肌肉受到严重影响时要更加注意。
Localized scleroderma often begins during
childhood. Any form of scleroderma (either systemic or
localized) that begins during childhood is called Juvenile
Scleroderma.
局限性硬皮病常在孩童时期发病,任何一种形式的硬皮病(不管是系统性还是局限性),只要在孩童时期发病就叫少年硬皮病。
SITE TOUR
网站指南
MEDICAL
On our main Medical page
you can find links such as What
is Scleroderma?, Causes
of Scleroderma, Symptoms,
and Treatments.
You can also learn about scleroderma-like
illnesses, and dozens of other
autoimmune diseases.
医学
在我们的医学网页上,你能够找到象什么是硬皮病?硬皮病病因、症状和治疗的链接。你还能从中学到与硬皮病相类似的疾病和一些其他免疫系统疾病的知识。
FIND
A SCLERODERMA DOCTOR
There are only a few dozen Scleroderma
Treatment Centers in the world. A scleroderma specialist
can work with your local doctors, and give you access to
participation in clinical trials, too.
寻找硬皮病医生
世界上硬皮病治疗中心较少。在这里你或你当地的医生可以在网上相关的硬皮病专家进行交流,可以给你参与临床医疗的机会。
Peking Union Medical College Hospital is the clinical medical school of China Union Medical University, and the clinical medicine research center of Chinese Academy of Medical Sciences. It is a large-scale general hospital which integrates medical service, education and research. It is also one of the technique instruction centers for dubious and acute diseases designated by Ministry of Health. Worldwide scleroderma experts highly recommend this hospital. See Rheumatology Department for Scleroderma. Posted 04/14/08.
Shanghai Renji Hospital (Rheumatology Department) is a top center for the treatment of scleroderma in China. Worldwide scleroderma experts highly recommend this hospital. Posted 04/15/08.
Department of Rheumatology, Yiling Hospital of Hebei Medical University in China. The Scleroderma Treatment Center of our hospital started in 1992,and it is one of the several earliest Scleroderma Treatment Centers in China. Up to now we have treated more than 8,000 scleroderma patients successfully, using Chinese traditional medicine taken orally or for external use. Our patients come from not only China, but also Japan, Italy, Argentina and so on. (Address: Xinshibei Road, #385, Shijiazhuang, Hebei, China. Tel: 86-0311-83809761, E-mail: sclerema@hotmail.com.) Posted 04/11/08.
中国河北医科大学附属以岭医院免疫风湿科。成立于1992年，是中国成立最早的硬皮病治疗中心之一。到目前为止已经用口服或外用的中药成功治疗了超过8000名硬皮病患者，大部分是中国的患者，有的来自日本、意大利、阿根廷等国家。地址：河北省石家庄市新石北路385号；电话：86-0311-83809761；E-mail:sclerema@hotmail.com。) Posted 04/11/08.
SUPPORT
GROUPS
Find a Scleroderma
Support Group near you, from Australia to the United
Kingdom. We offer to make and post a
free web page for any scleroderma support group in the world.
You can use this free service to start your own support group,
or to promote an existing group.
援助组织
你可以从这里寻找到你身边的硬皮病援助组织,哪怕你远在澳大利亚或英国。我们为世界上这样的组织提供免费网页,以供其制作。你可以利用这项服务创建你的援助小组或发展你原来就有的类似团体。
PATIENT
AND CAREGIVER STORIES
Many people find comfort or inspiration from reading about
how other patients, caregivers, and survivors have dealt
with scleroderma. Our story
collection features over 100 heartfelt, true stories
from all around the world.
患者和护理者的故事
很多人在阅读有与自己同样命运的人的故事中或有关的护理人员的故事中获得安慰。而阅读那些有同样命运并进行了抗争而幸存的人的故事后,他们能够得到鼓励。为了这个目标,我们的story
collection从全世界收集了100个真实的故事,衷心地希望读者能够从中获益。
SUBMIT
YOUR STORY
I would like to personally invite you to share your story
with us. It's as easy as writing an email, with our easy Story
Submission Form. This is a terrific way of giving support
and encouragement to others and offers a timeless gift to
all of us.
告诉我们你的故事
我诚挚地希望您能让我们在网上分享你自己的故事。如果您愿意,只要发封电子邮件给我们的Story
Submission Form,把您的故事告诉我们就可以了。
MESSAGE
BOARD & EMAIL LIST
Patients, caregivers, family, and friends
are all very welcome to participate in all scleroderma
organizations and online forums. The Sclero
MSN Community is a message board with email notification
for visitors to this website. If you register to join the
community, then you can receive emails whenever someone
posts a message, and you can participate in the discussion
by either posting on the message board, or by just replying
to any email from Sclero MSN.
消息栏和电子列表
硬皮病患者及其家属、好友或者相关的护理人员,欢迎你们加入硬皮病组织和再线论坛。 Sclero
MSN Community是本站的消息栏,如果你加入我们,不论谁在消息栏中发表了消息,你都可以以电子邮件的方式收到。而且你可以通过消息栏加入讨论,或者在Sclero MSN回答相关问题。
HOPE
ON HORIZON
I recommend that you begin your online journey by viewing Scleroderma:
Hope on the Horizon. I made this FLASH animation based
on a poem written by Fran Waranius, in praise scleroderma
researchers and also of the wonderful SD World email list.
希望在地平线
我希望你能够先看Scleroderma:
Hope on the Horizon.来开始你的网上之旅。我以Fran Waranius所写的诗为背景做了个FLASH,把它献给那些为硬皮病辛勤工作的探索者们,并且希望SD World电子信箱联络名单的壮大。
SCLERODERMA
SITES TO SURF!
If you have a scleroderma website, I invite you to join the
free Scleroderma
Webmaster's Association to publicize it worldwide as
part of our very popular Scleroderma
Sites to Surf program.
如果你有个有关硬皮病的网站,我希望你能够加入Scleroderma
Webmaster's Association,并且向世界公布,这也是我们Scleroderma
Sites to Surf工作之一。
Please let me know if I can ever be
of more help to you, as you get settled into our wonderful
and supportive online community.
Warm Hugs and Best Wishes,
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