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发表于 2014-7-20 10:02:23
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My Vitiligo "Cure"
For me, it has been a case of fourth time lucky...I have only tried 4 treatments for the condition over the years. Two were unsuccessful. One was dangerous. The latest is recent and – at the time of writing this - ongoing* but very encouraging, although I have learned to be cautious when it comes to raising my hopes of a total “cure”. The first treatment – in my 20s – was PUVA and it was a complete failure in my case, which just goes to show that what works for one person will not necessarily work for another.
The second – in my 30s – was Olive Leaf Extract, taken as a supplement, which I had heard had produced some improvement for another Vitiligo Society member. I did experience a very limited amount of repigmentation on my neck as a result of this, as well as a general lessening of contrast between some of the other patches and the surrounding skin. I also formed the impression that it helped protect me against sunburn. However, despite continuing to take OLE for the next 10 years or so, I had no further improvement and the patch on my neck gradually lost its colour again.
My strong advice is - if there's no clear list of ingredients, don't go there!
The third (disastrous) treatment I tried - in my mid 40s – was a Chinese herbal preparation (with no available list of ingredients) that had to be applied topically before moderate exposure to sunlight. I used it on all the patches on my arms, legs and neck (thankfully not my face) and sat out for around 20 minutes on a cool cloud-covered spring day. It wasn’t until some hours later that I found I had burned horribly as a result and I spent the next 2 weeks going back and forth to the doctors having creams and bandages applied and reapplied. The result - apart from relief that I had no permanent scarring - was a minimal amount of re-pigmentation in the crooks of my arms, which has remained, but wasn’t worth the pain involved. I am guessing this concoction contained psoralea, which I now realise is explosive stuff if applied without medical supervision. So my advice is please think twice before self medicating with products that have no clear instructi**, ingredients or dosage guidelines.
Could vitiligo (in some people at least) be due to nutritional deficiencies?
My current treatment is a natural, nutritional one that I came across by chance when I took on a new brand of cosmetics for my make-up clients. The same suppliers also produce nutritional and natural tanning products, so I decided to see if any of them might be helpful with my vitiligo. I had read various pieces of anecdotal and clinical evidence suggesting certain amino acids, vi**ins and minerals can be effective in treating vitiligo, especially in conjunction with moderate UV exposure. So I decided to take several nutritional products, including two that were advertised as part of the tanning range. Taking several products at once (albeit phased in over a period of weeks) was rather unscientific of me because it made it hard to know which of them was producing the results, but my own perception is that one – or possibly a combination of the following 3 - are the most likely causes of my improvement. This is a brief description of each product taken from the brochure (full lists of ingredients are on each bottle) and I have listed them in order of perceived benefit, as regards the effects on my vitiligo: 1) Boost: a formulation of “15 different vi**ins, minerals and nutrients to supply the body’s natural tanning process”; 2) Five a Day +: a ‘superfood’ formulation of “21 nutrient dense foods that are rich in natural enzymes, minerals, amino acids, vi**ins and antioxidants”; 3) Bronze: a formulation of 5 natural carotenoids along with essential amino acids and … vi**in E.
I started taking the ‘superfood’ supplement first, which made me feel more energetic and healthier but had no immediately apparent effect on my skin. About 10 days later I added the carotenoid formula, which within days had lessened the contrast between the vitiligo patches and surrounding skin by providing a pale flesh colour to all the patches which had previously been stark white. At this stage there was no noticeable re-pigmentation as such.
"Boost" and Five a Day+ seemed to be the key supplements...
Roughly 3 weeks later I added the first product described above, "Boost"– the one designed to optimise the body’s natural tanning process – and made sure I had a safe amount of sun exposure on a regular basis (luckily it was a sunny springtime, going into summer). Almost immediately I started to notice a few freckles appear in some of the white patches and these have continued to develop over the weeks and months since then. My chest and the patches around my eyes were the first areas to start re-pigmenting. I also developed a significant amount of re-pigmentation, in the form of freckles on my arms and hands, which was all pretty exciting for me because I had never before had any real improvement in my vitiligo since it started. I tried not to raise my expectati** too high throughout this process but couldn't help feeling a rising sense of excitement.
If my experiences with treatments have taught me anything, it’s that it makes sense to try opti** that have either been recommended by qualified medical professionals, endorsed by the Vitiligo Society, or based on clinical or anecdotal experience with non-hazardous opti** (like the nutritional approaches I have used), but that you use unspecified substances supplied by unregulated practitioners at your peril.
I have also learned that, for me, the wisest attitude to adopt towards any treatment is one of cautious optimism, as this allows you to maintain a positive outlook without exposing me to risk or disappointment - and it’s an approach I would certainly recommend to others.
I was delighted because at least it proved there was still pigment in my skin and that it could be re-activated. After about 4 months (April – August 2009) I was already thrilled with the amount of pigment that had started to reappear. It seemed to be recovering in two distinctly different ways. The majority of patches were producing freckles of varying sizes, but others were simply turning a uniform milky pale flesh colour (as opposed to the stark white they had previously been). At this stage I suppose my skin was more peculiar looking than ever because I was now a variety of flesh colour, white, milky, and mottled! However, I was delighted because at least it proved there was still pigment in my skin and that it could be re-activated. My previous assumption had been that it had somehow been lost forever – destroyed by the disease.
Enter narrow band UVB ...
As summer was coming to an end, I realised I would probably need to compensate for the loss of sun exposure during the winter months because the Boost supplement, which was the one I strongly suspected was mainly resp**ible for the re-pigmentation was designed for use in conjunction with UV light. I seriously c**idered buying a sunbed but had just enough sense to know that this would be a rash and potentially dangerous thing to do, especially with no medical supervision. So I explained my situation to my GP, showed her the improvements in my vitiligo, took the vi**in packaging with me to show her and asked if she would refer me for a course of UVB treatment. She agreed this would be a good idea and I began my UVB in the autumn. The dermatology c**ultant at the hospital was pleased to see the amount of re-pigmentation that had occurred and was intrigued by the story of the vi**in supplements. He was understandably non-committal, but open-minded, about the part they might be playing in my recovery and agreed that I should continue taking Boost and Five a Day+ during my light treatment. We jointly agreed that I should stop taking the carotenoid supplement Bronze for the duration of UVB treatment as it was most likely producing a purely cosmetic result and not actually stimulating pigment.
Some six months into my UV light treatment some areas of vitiligo had completely re-pigmented (e.g. the entire area under my chin and down to my adam's apple, roughly 99% of my face - which had lost all of its pigment over the years, and the patches either side of my waist). Other areas are almost completely filled in (e.g. my lower arms and chest - previously completely de-pigmented - and my spine, shoulders and shins. The remaining patches (backs of hands, tops of feet, calves and thighs were all smothered with freckles that subsequently began joining up.
Is there such a thing as being cautiously ecstatic?!
Needless to say, I am ecstatic. I am now able to wear summer clothes for the first time in about 40 years without having to think about using camouflage or self tan. I am now also frequently going without make up for the first time since I was a young teenager. But, best of all, is looking in the mirror without make up on and recognising myself as the "me" I remember being after practically a lifetime of feeling I was hiding behind a mask.
I don't know what will happen when I finally reach the end of the UVB treatment [SEE UPDATE]. I know I must accept the possibility that I may suffer a reversal as some UVB patients do. However, as my re-pigmentation started with the supplements and continued for months before the light treatment started, I've every reason to hope that continuing with these supplements will provide my body with the nutrients it needs to maintain my restored pigment permanently.
If in doubt about the safety of any remedies on this website - or, more importantly, elsewhere - I highly recommend c**ulting your doctor before doing anything. Above all, beware of claims of universal, instant or guaranteed "cures". If it seems too good to be true, it probably is!
[* Since writing this almost 4 years have passed and my re-pigmentation is virtually complete (just some mottling on hands and feet, but even this is still improving) and all the pigment I have regained is stable :) Unlike most UVb vitiligo patients, who experience a relapse at some point after discontinuing light therapy, I have actually continued to improve. I believe this is because I am supplying my body with the nutrition it requires]
I now try to avoid contact with potential toxins and anything that can increase free radical damage and am moving toward a much more natural, organic lifestyle. Most people with vitiligo are probably aware that one feature, or trigger, of this skin condition is oxidative stress and that vitiligo patients therefore need to avoid contact with synthetic chemicals to minimise this (as well as loading up on antioxidants, hence the green superfoods that form part of my re-pigmentation protocol). But how many of us are leading an organic lifestyle - or at least as natural a one as possible - which of course is the logical way of minimising contact with toxic ingredients?
I'm not fully organic yet, it must be said, but I am gradually switching over to natural (and organic where possible) toiletries and cosmetics. I now use an aluminium-free deodorant, eco-certified organic makeup and am about to switch from one of the less harmful permanent hair dyes to a natural henna product. I recently read that the same chemicals in mainstream hair dyes are also present in many fabric dyes too. This fact, coupled with the knowledge that wearing tight clothing that causes friction to the skin can cause vitiligo to spread, makes me wonder if it might also be wise for vitiligo sufferers to opt for organic clothing too.
Vitiligo Protocol: personal story - a personal " cure "
我的白癜风“治愈”
对我来说，它一直是第四次幸运的情况下......我只尝试了4次治疗多年来的条件。二是不成功的。一个是危险的。最新的是最近和 - 在写这篇的时候 - 正在进行的*，但非常令人鼓舞的，虽然我已经学会了谨慎，当谈到提高我的希望总“治愈”。第一次治疗 - 在我20多岁 - 是光化学疗法，它是在我的情况完全失败，这只是表明了什么对一个人不一定适合另一个。
第二 - 在我30多岁 - 是橄榄叶提取物，作为一种补充，这是我听到过产生了一些改进的另一个白癜风协会会员。我做了我的脖子上遇到一个非常有限的复色量为这样的结果，以及一些其他的补丁和周围皮肤的对比度普遍减少。我也形成了印象，它帮助保护我免受晒伤。然而，尽管继续采取的OLE未来10年左右的时间，我没有进一步的改进和在我脖子上的补丁又逐渐失去了光彩。
我强烈的建议是 - 如果有成分没有明确的清单，不要去那里！
第三个（灾难性的）治疗我尝试 - 在我40年代中期 - 是中国草药制剂（与成分没有可用的列表），必须予以适度暴露在阳光下之前，局部应用。我用它在我的胳膊，腿和脖子（幸好不是我的脸）的所有补丁和坐出一个清凉的云覆盖的春天大约20分钟。但直到几个小时后，我发现我已经烧了可怕的结果，我花了接下来的2周去来回有霜和应用，并重新应用绷带的医生。结果 - 除了救灾，我有没有永久的疤痕 - 是重新色素沉着在我的怀里，这至今仍是一个骗子少量，但是是不值得参与的痛苦。我猜测这药汁包含的补骨脂，这是我现在知道的是爆炸性的东西，如果应用没有医生的指导。所以我的建议是请三思而后行自我用药治疗之前，有没有明确的说明，成分或剂量指南产品。
请问白癜风（在某些人至少）是由于营养缺乏？
我现在的治疗是一种天然，营养的一个，我碰到一个偶然的机会，当我把化妆品新品牌为我化妆的客户。同样的供应商也会产生营养和天然鞣制产品，因此我决定看看其中是否可能与我的白癜风有帮助的。我读了各件轶事和临床证据表明，某些氨基酸，维生素和矿物质，可有效地治疗白癜风，尤其是在温和的UV曝光一起。所以，我决定采取一些营养产品，其中有两个项目被标榜为制革范围的一部分。以几个产品（虽然分阶段在一个星期内）是相当不科学的我，因为它使人们很难知道其中哪些是生产的结果，但我自己的看法是，一个 - 或者可能是以下组合3 - 是我进步的最可能的原因。这是从宣传册（成分全名单上每一瓶）和我列出他们为了感知利益，就在我的白癜风的影响采取的每一个产品的简要说明：1）升压：“十五配方不同的维生素，矿物质和营养素，以供应身体的自然鞣制工艺“; 2）每天五+：为“21营养密集的食物，含有丰富的天然酵素，矿物质，氨基酸，维生素和抗氧化剂”一个“超级食品”配方; 3）铜奖：配方的5天然类胡萝卜素以及人体必需的氨基酸和...维生素E。
我第一次开始服用“超级食品”的补充，这让我感到更加精力充沛，健康的，但对我的皮肤没有立即明显的效果。大约10天以后，我添加了类胡萝卜素的公式，这在几天内就减少白癜风的补丁，并通过提供一个苍白的肤色到所有以前一直鲜明的白色斑块周围皮肤之间的对比。在这个阶段，没有明显的再色素沉着是这样。
“升压”，并每天五+似乎是关键的补充...
大约3周后我加了上面描述的，“提升”的第一个产品 - 一个旨在优化身体的自然鞣制过程 - 并确保我有阳光照射的安全量，定期（幸运的是，这是一个阳光明媚的春天，进入夏季）。几乎就在同时，我开始注意到一些雀斑出现一些白色斑点，并且这些继续发展在此后的几周和几个月。我的胸部和我的眼睛周围的补丁是开始重新着色的第一个区域。我还开发了显著金额的重新色素沉着，在我的胳膊和手，这一切都非常令我兴奋，因为我从来没有在我的白癜风任何真正的改善，因为它开始雀斑的形式。我试着不让自己在这个过程中提高我的期望值太高了，但不由感到兴奋的上升感。
如果我的经验治疗教会了我什么，那就是是有意义的尝试要么被推荐资格的医疗专业人士，通过的白癜风协会，或根据临床或根据经验采用无毒无害的选项（如营养选择方法我都用过），但是你使用了不受管制的从业者，后果自负提供的不明物质。
我也了解到，对于我来说，采用对任何治疗是最明智的态度是谨慎乐观的，因为这可以让你保持积极的态度，而不会暴露我的风险或失望 - 这是一个方法，我一定会推荐给别人。
我很高兴，因为至少它证明了有色素仍然在我的皮肤上，它可以被重新激活。经过约4个月（月 - 2009年8月），我已经兴奋与色素，已开始重新出现量。它似乎在复苏两种截然不同的方式。大部分补丁都产生大小不等的雀斑，但其他人只需转动均匀的乳白色淡肉色（相对于全白，他们以前都是）。在这个阶段，我想我的皮肤比以前更奇特的期待，因为我现在是各种肉的颜色，白色，乳白色，和斑驳的！不过，我很高兴，因为至少它证明了有色素仍然在我的皮肤上，它可以被重新激活。我以前的假设已被它在某种程度上已经永远失去了 - 被疾病摧毁。
进入窄谱UVB...
由于夏季是即将结束时，我意识到我可能会需要弥补阳光照射在冬季的几个月的损失，因为升压的补充，这是一个我强烈怀疑，主要是负责重新色素沉着是专为使用在用UV光结合。我认真考虑购买日光浴床，但有足够的知道意义，这将是轻率的和有潜在危险的事情，特别是没有医疗监督。所以，我解释了我的情况，我的GP，显示了她在我的白癜风的改进，把维生素包装，我告诉她，并问她是否指我要UVB一疗程。她同意，这将是一个好主意，我开始了我的UVB在秋季。皮肤科顾问在医院很高兴看到重新色素沉着所发生的和很感兴趣的维生素补充剂的故事金额。他是可以理解的不明确，但心胸开阔，约他们可能会打在我恢复的一部分，并一致认为，我应该继续服用升压和每天五+期间我光治疗。我们共同认为我应该停止服用类胡萝卜素补充剂铜奖UVB治疗时间，因为它是最有可能产生一个纯粹的美容效果，而不是真正刺激色素。
约六个月到我的紫外光治疗白癜风的一些地区已经完全重新色素（例如整个区域下我的下巴，下至我的喉结，大约99％的我的脸 - 这已经失去了其所有的颜料多年来，和补丁要么我腰的一侧）。以前完全脱色素 - - 其他地区在（例如我的下臂和胸部几乎完全填满。和我的脊椎，肩膀和小腿，其余的补丁（手背部，脚顶，小腿和大腿都用窒息的雀斑随后开始加入了。
有没有这样的事情作为谨慎欣喜若狂？！
不用说，我欣喜若狂。我现在能穿夏天的衣服，第一次在40年左右，而不必考虑使用伪装或自晒黑。我现在还经常去没有弥补第一次，因为我是一个年轻的小将。但是，最重要的，是在照镜子没有补上，并承认自己是“我”我记得的感觉实际上我躲在面具后面一辈子后之中。
我不知道会发生什么，当我终于到达UVB治疗[请参阅更新]的结束。我知道我必须承认，我可能会蒙受逆转为一些紫外线B的病人做的可能性。然而，正如我重新开始的色素沉着的补充和延续几个月光治疗开始之前，我有充分理由希望与这些补品会继续提供我的身体，它需要永久保持我的恢复色素的营养。
如有疑问，有关补救措施的任何在本网站的安全性 - 或者，更重要的是，其他地方 - 我强烈建议在做任何事情之前咨询你的医生。首先，谨防普遍，即时或担保的“治疗”索赔。如果它似乎好得是真实的，它可能是！
[*由于写这近4年过去了，我重新色素沉着几乎是完整的（只是手脚有些斑驳，但即使这样仍然是改善）以及所有我已经恢复的色素稳定:)不像大多数UVB白癜风患者，谁停止光疗后出现复发在某些时候，其实我也继续改善。我相信这是因为我用所需要的营养供给我的身体]
我现在尽量避免与潜在的毒素以及任何可以增加自由基损伤的接触和正在走向一个更自然的，有机的生活方式。大多数人白癜风可能知道，一个特征，或触发，这种皮肤状况是氧化应激，因此白癜风患者需要避免与人工合成化学物质接触，以减低本（以及负载上的抗氧化剂，因此，绿色的超级食品形成了我重新色素沉着协议的一部分）。但我们当中有多少是领先的有机生活方式 - 或至少是自然的一个作为可能的 - 这当然是尽量减少与有毒成分接触的合乎逻辑的方式？
我不是完全有机的是，它必须说，但我逐渐切换到自然（有机如有可能）洗浴用品和化妆品。我现在用的无铝除臭，环保认证的有机构成和我即将从危害较小的永久性染发剂中的一个切换到天然指甲花产品。最近，我读了主流染发剂相同的化学物质也存在于许多织物染料了。这一事实，再加上知识，穿紧身的衣服会导致摩擦到皮肤上可引起白癜风扩散，使我怀疑它也可能是明智的白癜风患者要选择有机服装了。
白癜风协议：个人的故事 - 一个个人的“治愈”
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