病情调查, 想指出我们严重病友的一个治疗方向

< >病情调查

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< >有人说天天泡在这个论坛的病友病情都比较严重或曾经严重过，因为病情不严重的或没有严重过的一般不会来了。

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< >做这个病情调查的目的是想指出我们严重病友的一个治疗方向：

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< >减轻病情，让病情反复越来越不频繁，全身都有的争取减轻到局部。

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< >如果调查结果证明在这个论坛的病友病情都比较严重或曾经严重过，说明有一大批病情不严重的或没有严重过的病友不在这个论坛里。因为我在美国银屑病基金会网站上看到以下病情统计：

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2.1% 的美国人患有银屑病

患病者中约有70% 病情很轻，只局部有，不超过全身 3%

患病者中约有20% 病情一般，不超过全身 10%

患病者中约有10% 病情重度，病发全身，超过全身 10%

那70% 的病友有很多都不知道自己有银屑病，对日常生活没有任何影响。

我们之所以不幸到了这10% 里头，我想大概有很多是不正当使用药物所致，我自己大概就是用了超强激素。

我们不能预知未来，但我觉得银屑病最可怕的地方就是人家告诉你这病一辈子就这样了。人总要活在希望中，我们的希望在哪儿呢？如果有一大批老病友告诉你，他梦曾经跟我们现在一样严重，但经过一段长时间的正确对待，治疗或不治疗，他们的病情回到了那70% 的轻微病友当中，那对我们是不是一个好消息呢？

<>I live in the US but I could not type Chinese on the company PC. In the weekend when I have time I will type Chinese. Sorry for the inconvenience.

<>It is less of a problem regarding "medical morality" in the US compared to the situation in China. Here one could not claim himself "Doctor" unless he received very formal medical training until the PhD/MD level. Although there are indeed the problem of doctors being irresponsible to the patient.

<>In the special case of Psoriasis, US doctors almost certainly give out steroid. This is the very strange thing I could not understand, as we all agree steroid is dangerous and do not produce remission especially for Psoriasis patients, why they are still giving steriods?

<>请问楼上的如何自救的？您的自救经验正是我们大家在这个版上的原因。望不吝赐教。

<>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]