美国白癫风基金会网站（有译文）

万家灯火 · 发表于 2006-8-18 11:07:01

难道UVB与维生素成正比例关系

万家灯火 · 发表于 2006-8-18 11:10:29

国外好象就会用普特皮，是白种人还是黄种人啊。

一叶漂萍 · 发表于 2006-8-18 15:10:56

21金维它不是也含维C吗?我以前吃,后来听别人说不好就没吃了,现在家里还剩好几瓶了

rank5 · 发表于 2006-8-18 15:31:33

Ok, what I see in this thread is exactly what happened to me when I was first diagnosed with Vit. I freaked out and if someone would've told me that standing on my head and spitting bb's was a good idea I would've done it and advocated for it over and over again. Here's what I've learned in having Vit for 5 years now (along with 2 other autoimmune diseases since age 11). First of all, Vit is an autoimmune disease and when you have one autoimmune disease you're suceptible to all of them. Now, don't wig and start thinking that you're going to come down with every other disease under the sun. You're not. But chances are, if you have one, you could get another one. I started with Hashimoto's Disease (thyroid disorder, that like 1/2 the people on this site probably have) at age 11. At 16, I was diagnosed with Palindromic Rheumatism (very rare and I don't know another soul that has it). Got Vit when I was 27. I'm 32 now and I've pretty much stopped all the stuff I was doing that repigmented 85% (or so) of what I originally lost.Bb是自体免疫疾病. 你患上一种自体免疫疾病, 就可能患有其它自体免疫疾病. 但是不要因此担心你会因为其它疾病而倒下. 你不会倒下, 但是患上其它这类疾病的概率是存在的. 我就陆续得了几种自体免疫疾病, 然后27岁得了bb. 我现在32了, 现在停止了用药. 药品曾经让我恢复了大概85%的bb.<place wst="on"></place>

rank5 · 发表于 2006-8-18 16:01:03

Ok, what I see in this thread is exactly what happened to me when I was first diagnosed with Vit. I freaked out and if someone would've told me that standing on my head and spitting bb's was a good idea I would've done it and advocated for it over and over again. Here's what I've learned in having Vit for 5 years now (along with 2 other autoimmune diseases since age 11). First of all, Vit is an autoimmune disease and when you have one autoimmune disease you're suceptible to all of them. Now, don't wig and start thinking that you're going to come down with every other disease under the sun. You're not. But chances are, if you have one, you could get another one. I started with Hashimoto's Disease (thyroid disorder, that like 1/2 the people on this site probably have) at age 11. At 16, I was diagnosed with Palindromic Rheumatism (very rare and I don't know another soul that has it). Got Vit when I was 27. I'm 32 now and I've pretty much stopped all the stuff I was doing that repigmented 85% (or so) of what I originally lost.Bb是自体免疫疾病. 你患上一种自体免疫疾病, 就可能患有其它自体免疫疾病. 但是不要因此担心你会因为其它疾病而倒下. 你不会倒下, 但是患上其它这类疾病的概率是存在的. 我就陆续得了几种自体免疫疾病, 然后27岁得了bb. 我现在32了, 现在停止了用药. 药品曾经让我恢复了大概85%的bb.

rank5 · 发表于 2006-8-18 16:01:22

When I first came to this site 5 years ago, people were saying don't eat onions. I eat onions probably everyday and my vit has only slightly changed in the past few years and I can almost assure you it's not from the onions I eat. 我5年前来到这个网页, 人们说不能吃洋葱, 我几乎天天吃, bb也没有什么明显变化, 所以我认为bb不是由洋葱带来的.I was taking aver 30 vitamins a day to the tune of hundreds of dollars a month. I ate organic only for about a year. I used Protopic. Sat in the sun for short periods of time. Did Jaffe-Mellor treatements. Body detox using a Bio-Cleanse machine. Did Emotional Freedom Therapy. There's no doubt that much of it worked. 我每天服用超过30钟维他命, 服用有机药物. 外用普特皮. 不时晒太阳. 各种理疗, 情绪疗法, 等等. 无疑这些做法很多都是有效的.Here's what I know today: There's no way in heck that I could keep all that stuff going. First of all, it was too expensive. Second, it CONSUMED my life. It got ridiculous. It affected my quality of life. It was a drag, to be honest. What I know is that my vit spoke to me in a way that my other autoimmune diseases didn't. Vit made me take notice of my body and of my health. I just take the time now to listen and see what's going on with me. I think the root cause of my vit was my inability to take care of me--physically, mental and spiritually. Getting vit changed my life forever, but I live a normal life and I still eat McDonald's on occasion. 我没有理由把这些疗法都坚持下去. 很贵, 费神, 影响我生活的质量. 这些疗法是个拖累. Bb让我注意自己的身体, 注意到自己的健康. 我仔细观察自己的状况. 我认为bb的原因是我没能照顾好自己, 生理上, 心理上, 精神上. Bb永远地改变了我的生活, 但我过得很正常很普通, 我有时候也去麦当劳J

rank5 · 发表于 2006-8-18 16:01:37

What do I do now? I live. I have a good attitude. I love explaining to people what the spots are--if they even notice them. In other words, after a while, I just got over it. I know I may sound cynical, but there's a whole lot more going on in my life other than vitiligo and I'm going to choose to focus on all that other good stuff.现在我干什么呢? 活着. 我心态很好. 如果有人注意到了我的bb, 我很乐意向人们解释那些点点是什么. 换句话说, 一段时间之后, 我战胜了bb. 听起来我很愣头青, 但是生活除了bb还有很多内容, 我会集中精力应对所有美好的内容.NOW, when it comes to diet. There is some evidence out that that folks w/ autoimmune problems do/can suffer from digestive issues. I know I did and sometimes still do. Lots of folks w/ autoimmune issues experience bloating and gas, and other digestive issues. I would say that we may not process food well, therefore, we might not be soaking up vitamins and minerals as well as we should. Am I a doctor? No. I just know what happened/happens to me.现在, 谈谈饮食. 很多自体免疫疾病患者有消化问题, 他们会腹胀等等. 我们得把食物按照合适的方式处理加工, 不然就无法有效获取营养成分.Live. That's my best advice to you. Just live. Eat a little sugar. Eat some veggies. Don't get overwhelmed by what everyone suggests. Follow your gut. Listen to your own body. It often tells us what we need to do if we're willing to listen.活着. 这是我对你们最好的忠告. 平和地活着. 吃吃糖类, 吃吃蔬菜. 不要被人家的各种各样的建议弄晕. 根据你自己的情况生活. 你自己的身体会告诉你该怎么做.<place wst="on">Shannon</place>

rank5 · 发表于 2006-8-18 16:02:03

I am not a doctor but I belive that food/diet has a real connection to Vitiligo. In my case, stress has caused me to have a pretty poor diet over the last number of years and my Vitiligo, which has been relatively stable has now affected a new area on my right hand. I notice that when I eat right I feel better anyway. It can be a chicken and egg problem, do I have a poor diet because of stress or does stress cause me to have a poor diet? Neither helps the situation. I have seen that wheat, spicy foods, alcohol and some other foods make my skin break out and when I do not eat that stuff, my skin is clear. I was interested to see that someone mentioned chicken as a possible culprit. I'm going to eliminate that for a while. I also think that antibiotics play a role. Not long before I first noticed the Vitiligo on my face I had been hospitalized to receive introveneous antibiotics for an infection I sustained followng minor surgery. I have a mitral valve prolapse, so I have to be premedicated for certain procedures, including dental work. I recently had surgery for which I had to be premedicated with introvenous antibiotics. Just before the original onset, I had sun exposure which was not my usual MO and went through some traumatic events. My Vitilgo has just started spreading again. I am also considering stopping dying my hair. While people search for a medical "cure," I think that I'm going to try a vegetarian diet and make sure to get enough exercise, rest, folic acid, B-12 and other things I've just read about as possible aids in stopping or helping the condition. Am interested in hearing about others' successes. Thanks.  我不是医生, 但我相信食物确实跟bb有实际联系. 比如我, 压力使我饮食糟糕, 连年如此, 原本稳定的bb现在有所扩散. 我如果好好饮食, 我会感觉好很多. 这是个循环问题, 是饮食导致了压力呢, 还是压力导致了糟糕的饮食呢. 我发现小麦, 辣椒, 酒精等食物对皮肤很不好, 当我不吃它们的时候, 我的皮肤就很清爽. 有人认为鸡也是不好的. 我打算忌了它. 抗生素好像也不好. 我注意到脸上的bb之前, 曾经为感染就医, 服用抗生素类药品. 加上其它种种原因如日晒等等, 我的bb又扩散了. 我考虑停止染发. 人们都在寻找药物的治疗, 我觉得饮食和锻炼, 休息和营养也都很重要.    After seeing all the arguments about food vs. genetics and ect ect let me state the obvious that it is most likely a combination. I personally believe in the biological concept of aquired characteristics and if you believe in genetics, then you should also. It states that certain tendencies over generations maybe predispose people to having certain characteristics. 我认为饮食和遗传的作用是同时存在的. 它们共同作用. 我各人相信生物概念上讲的所谓先天性格. 即, 很多情况下性格的很大方面是由基因觉得的.For example someone said their mom used to eat lots of sweets and maybe there is a correlation between that and her vit and his vit as well. I know many of my more recent ancestors eat too many sweets and my gma even has diebetes. Maybe that unhealthy sweet diet over generations are highly attributed to the prevalence of vit. 吃甜食跟bb没有什么关系, 据我所知.I know these two parents with vit whose two daughters are both fine. I'm not trying to prove anything by saying that, but it is interesting to note this, and i'd want to see studies done on their health and others who have vit, 我认识一对bb家长, 他们的两个女儿都很正常. 这不是为了证明什么, 我只是指出来, 希望我们能从中研究出什么结果….

yzt2001com · 发表于 2006-8-21 00:53:46

感谢RANK5，真诚的谢谢你为我们付出这么大的辛苦，我知道你肯定不图回报什么的，朋友你辛苦了，好人一生平安………………以后如果有好点的资源我会及时告诉大家的，与大家共享：）

[此贴子已经被作者于2006-8-21 0:57:05编辑过]

海大王 · 发表于 2006-8-21 17:59:04

<div class="msgheader">QUOTE:</div><div class="msgborder">以下是引用rank5在2006-8-15 13:56:48的发言： 楼上的意思是, 光服用这些营养品就可以缓慢恢复, 还是在辅以药物治疗? 谢谢</div>整理一下我治疗的方法作为病友参考(北京空军总医院蔡瑞康专家药方):    1、中药:生地:20,丹参:20, 黄芪:9,党参:9,乌梅:9,补骨脂:9,女贞子:9,沙苑子:9,刺蒺藜:9,川穹:6,当归:6,生甘草:6.     2、西药:甲钴胺片\叶酸片\复合维生素B片\甘草锌胶囊     3、外用药:普特彼(他克莫斯软膏)                             目前我脸部和脖子处已经恢复的差不多了，手上和躯干的许多部位也在变红恢复中。愿我们的病友也找到适合自己的治疗方法，早日康复！！！

[此贴子已经被作者于2006-8-21 18:08:29编辑过]

春夏秋冬 · 发表于 2006-8-22 10:15:53

<div class="msgheader">QUOTE:</div><div class="msgborder">以下是引用一叶漂萍在2006-8-18 15:10:56的发言： 21金维它不是也含维C吗?我以前吃,后来听别人说不好就没吃了,现在家里还剩好几瓶了</div>我吃后BB發展得更快。

rank5 · 发表于 2006-8-22 13:03:05

欢迎  lucian118  朋友加入到翻译当中来, 很高兴认识你我自己也是有了空闲的时间就翻译一点, 很多时候一忙也就顾不上天天翻译了相信随着更多的朋友加入翻译工作, 这个事情会越来越成功期待更多朋友的加入!!

woailaopo · 发表于 2006-8-22 13:33:46

不止说什么

万家灯火 · 发表于 2006-8-24 10:12:07

呵呵，楼主怎么也表扬起我来，真不好意思。rank5是个好人，图的就是我们的BB快好呗~

万家灯火 · 发表于 2006-8-24 10:14:52

<div class="msgheader">QUOTE:</div><div class="msgborder">以下是引用lucian118在2006-8-19 16:20:55的发言：    饮茶可以提高自身的免疫力，茶是危险自由基的克星，自由基这类产物在机体内会破坏组织细胞，损伤DNA，加速机体的老化以及导致癌症的发生，   经常饮茶，不论是否是绿茶，都是对身体有好处的。   <span style="FONT-SIZE: 14pt; FONT-FAMILY: 宋体; mso-ascii-font-family: ˎ̥; mso-bidi-font-family: "Times New Roman"; mso-hansi-font-family: ˎ̥; mso-font-kerning: 1.0pt; mso-ansi-language: EN-US; mso-fareast-language: ZH-CN; mso-bidi-language: AR-SA;">很多患者得了白癜风后，往往会悲观、消沉，甚至恐惧，导致寝食不安，失眠多梦，有的想寻短见。象这种心理只会加重白癜风，因为这些因素将通过内分泌作用，使胸腺退化，免疫淋巴细胞的成熟发生障碍，而影响机体的免疫防御功能，白斑就易于扩散，给治疗带来了困难。因此，患者要乐观，开朗，克服一切不必要的思想顾虑，积极治疗，早日痊愈。</div>我记得说蒋介石不喝咖啡和茶是因为这种东西带有刺激性。茶是不是对BB不好呢

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