病情调查, 想指出我们严重病友的一个治疗方向

<>我就脚上有～一只脚多点一只脚少点～哎～夏天看来要穿运动裤了～哎

我得病一个多月,现在是全身都是红色小斑块.我感觉应该在60%左右吧.虽然现在有所消退,但不知道最终能到什么程度.....

80%

<>Although there are 2.1% Americans have Psoriasis, it is still very uncommon topic in the US society. Before I was diagnosed with Psoriasis, I did not know anything about this disease. I used to work in a large company for many years, almost know everybody in the company, if there are truly 2.1% Americans have Psoriasis, at least I should have heard about somebody have Psoriasis. But I did not. I guess people who get Psoriasis do not want to talk about it. People of course will be discriminated for their Psoriasis, this is easy to understand, visibally we are not normal.

<>There is a big difference between Americans and Chinese. Americans will usually not tolerate the skin lesion and will use any method to "treat" it. Most American who have Psoriasis will use steroid cream consistently for their life, until the steroid become ineffective, then they switch to something else. If you go to US psoriasis website, they all talk about the same thing, steroid, anthralin,coal tar,then PUVA,MTX,Soriatane, then ultimately biologic agent. MTX and Soriatane etc are typical western drugs used to suppress the immune system. If one take them for Psoriasis, one must be very very careful since they can produce remission for only about 3 to 6 months, after that, there will be a rebound if you stop taking them. So you have to take them forever for your life. How is that possible?

<>But I do have a relative who got Psoriasis in his eighties, he use steroid to treat it for many years, now he does not have any noticeable signs of Psoriasis. Of course he is still using his steroid cream frequently, but he is happy about the outcome.

<>This is the thing I could not understand, if there are 2.1% of population among the world who have Psoriasis, and Psoriasis is such a disabling disease, why I don't see many people on the street with Psoriasis? why I seldom hear from it? why doctors tell me it is nothing but a nuiance? It is so serious that I almost lost my capability to work for many months.

<>I then start to think whether my case is a very special case. Since most people who have Psoriasis only have very light symptom. There may be a misunderstanding, either doctors underestimate the seriousness of the disease, or we patient have exaggerated the seriousness of the disease. This is why I want to do this survey, trying to prove people here are almost all like me, whose psoriasis is serious. I ultimately want to prove thie following:

<>Even though Psoriasis is a lifelong disease, the particular skin lesion on our skin at this very moment at that very location will fade eventually. Some other new skin lesion will appear sooner or later, but that will fade also. With proper and careful handling,we may not have the skin lesion for a very long time, talking about more than 4 ot 5 years.

<>If it is such an infrequent and less serious thing, there is no need to over-worry about it.

<>I myself am not using any medicine ever sicne I realized the seriousness of the disease from the very beginning. I did use Clobetasol Propionate before I know the thing on my scalp is Psoriasis, for about one month, a very unfortunate thing to happen. Now I am recovering very slowly, most skin lesions are fading, but still very uncomfortable.

[此贴子已经被作者于2006-3-21 23:30:14编辑过]

我主要是双腿《蛮厉害》，身上是零星，没有用药， 只是脸上在涂萌尔夫，次数不多，效果不明显。

<>MY GOD 英文不在行啊 看的累。。。。

咱们这里有外国人那，也看不懂啊，谁能翻译一下。

<>Demark:你好！

<>容我妄自猜想，你已经在国外生活了许多年了吧？因为我感觉到你的英文回帖更切帖地表达了你的真实意识。

<>我用了一个多小时才读下你的回帖，一来由于我的英文水平实在是太差，二来由于你的回帖中涉及了我所不熟的许多名词和习语，看来你已经是习惯用英文来思想的人了。

<>回帖中所叙之观点我个人赞成，如有时间我将翻译此帖，同时也希望英文水准高的朋友尽快翻译此帖。

<>我个人以为Demark的这篇子对大家认识到“银屑病”是一个全人类所共同面临的问题是大有启示的。

[此贴子已经被作者于2006-3-23 16:11:25编辑过]

<>本来应该等lz本人来翻译的，那样最准确，但lz似乎几天没来，大家又希望尽快翻译，我权且译一译：

<>尽管在美国有2.1％的人患有银屑病，但在美国银屑病仍然是一个不普通的问题。在我确诊前，我确实对此病一无所知。我在一家大公司工作了数年，几乎认识每个同事，如果真有2.1％的人患有此病，我应该有所耳闻，但我没有。我想可能是大家不愿意谈论自己患病的事吧，想想也简单，因为患者（外表上）看起来就不正常，将被歧视。

<>而美国人和中国人不同的是，美国人不可能忍受皮肤上的任何问题并会使用各式各样的方法治疗它，而且大多数人终身使用激素软膏，直到激素失效后才尝试其它方法。如果你到美国的银屑病网站，你会发现患者都在讨论激素、蒽林、煤焦油，紫外线，氨甲喋呤，维A酸，生物代理（生物反馈）等。氨甲喋呤、维A酸等是典型的免疫抑制类西药。服用这种药物必须非常小心，因为药力只能持续3至6月，停药将会导致病情反弹，所以你将要长期服用它们，但后果会如何呢？

<>我有一个亲戚在80多岁时患此病，他用激素治疗此病很多年了，现在几乎没有皮损了，虽然他仍然经常使用激素，但他已经比较满意现在这个结果。

<>我开始认为我的银屑病是一个特例，因为大多数人的银屑病只有很轻的症状，这可能是个误解，有可能是医生低估了银屑病的严重性或者是患者夸大了银屑病的严重性。这就是我要作这个调查的原因，我试图证明银屑病的是否严重，包含如下几点：

<>    就算银屑病是个伴随一生的疾病，但某处皮损位置的皮肤最终将会变得正常，一些新位置上的皮损迟早也会出现，但最后也会恢复。如果在正确和细心的治疗下，我们的皮损不可能长时间存在，大约4到5年会好转。

<>    如果银屑病确实是这样不频繁复发而且不严重的病，那么我们没必要过分忧虑。

<>    我认识到此病的严重性后就没有再用任何药物，但在我确诊之前我用过一个月左右的丙酸氯倍他索，效果非常不好。现在我在缓慢的恢复，一些皮损在变淡，但依然感觉不适。

<>以上是译文

<>我个人的观点是，银屑病由于高度的因人而异，所以每个人表现的严重程度可能大不相同，轻的可能自己都没发现，重的连走路都困难（关节型、脓泡型），所以银屑病到底是否严重不好说，就像胃病有的人连感觉都没有，有的人痛得连胃都切掉一大半一样，但我个人觉得这个病还是不要乱治的好，先控制住就好。至于提到得80岁的老人得了银屑病使用激素，我觉得如果我能活到那个年龄用点激素也无所谓了，外用激素的副作用（皱纹、血管粗、依赖性）主要在皮肤上，到那个年龄了还在乎皮肤多几条皱纹吗，还在乎怕依赖上激素吗？但我们还年轻呀，靠自愈才是最好的方法，当然自愈不仅仅是不吃药，还应当有基于调养目前身上所有潜在慢性病（我认为p病和身上其它慢性病息息相关）和改进不健康生活习惯的保健方法，

<>我也是，小腿都连成片了。郁闷啊！