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鱼鳞病患者我们需要怎么护理
来源：上海江城皮肤病医院未知&&&&&&&阅读：次
&　　鱼鳞病患者我们需要怎么护理-鱼鳞病的在皮肤病当中也算是一种比较复杂的疾病之一，大部分的患者都是在小的时候就发生了鱼鳞病，只不过随着时间的推移，我们慢慢的感受到鱼鳞病给我们的生活带来的影响，我们就会更加的想去治疗和控制鱼鳞病的发展，我们生活中该如何护理是我们需要掌握，我们来看看上海江城皮肤病医院医生的建议：
　　鱼鳞病的患者需要保持良好的生活习惯，我们需要正视我们自身的疾病，任何疾病都是一样，我们必须保持乐观的生活态度，积极的配合医院的治疗，我们的疾病才能够得到控制，日常的生活中我们需要注意哪些，会对我们的病情有一定的帮助，我们看看一下两个方面：
　　一：鱼鳞病会随着季节的变化而变化
　　鱼鳞病的患者会随着时节而变化，鱼鳞病患者大多冬重夏轻，在秋冬降临之际，应依据天气变化及时添加衣服，防止风寒安慰皮肤，留意穿着保暖，避免表露部位皮肤受冻。平常生活规律化，劳逸结合。患者在临床康复时，有些病人的汗毛孔还没有完全疏浚，另表面皮微循环也未完全改善，我们以为消弭规范不能单纯从临床断定，假如皮肤润滑，斑纹一消逝就马上中止医治，这样容易复发。
　　二：鱼鳞病患者的饮食
　　鱼鳞病患者应多食含维生素类食品，如水果、蔬菜等。适当吃一些动物肝脏、胡萝卜等富含维生素的食品。蛋白类如鱼虾、羊肉、鸡肉、牛肉等;其他如香菜、香椿、芹菜、蘑菇等。 鱼鳞病患者应忌虾、海鲜、酒、辛辣食物，中医以为虾、海鲜有腥发之性、易化热动风；酒、葱、蒜、辣椒等食物性温助热，味辛能散，偏嗜这些食物或进食不当，均能使脾胃失和而诱发或减轻本病，但也不要忌口太严、太广，这样下去既影响身体安康，也不利于病情恢复。
　　鱼鳞病患者我们需要怎么护理-如果你还是有什么不清楚，或者是想要预约，请你联系我们的在线医生，上海江城皮肤病院祝你早日康复。
医生简介：上海江城皮肤病医院皮肤科学科带头人，主任医师，全国卫生文明建设先进工作者...
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医生简介：上海江城皮肤病医院特聘专家，皮肤科主任，上海市中西医结合学会会员...
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上海江城皮肤病医院是按国家三级医院设置的大型皮肤病专科医院。医院面积10000余平方米，开设病床104张。设有皮肤内科、皮肤外科、中医科、中西医结合科、银屑病门诊、白癜风门诊、性病科、激光美容科、医学美容科、康复理疗科、预防保健科等专业化特色诊疗
会诊标准：三甲医院医生医生汇聚，丰富的临床经验及精湛的医术、医德。
检查标准：将病灶放大至500倍，5分钟精准检测病因，不漏诊。
治疗标准：不损伤健康组织结构，减少创伤，保护功能，使患者尽快恢复健康。
康复标准：修复创伤、减轻疼痛、加速机体康复、巩固治疗效果。
上海江城皮肤病医院皮肤科汇聚了国内知医生生、学科带头人等一大批优秀医生教授。为提升诊疗实力，医院长期与各大著名三甲医院保持医疗信息互动，资源共享。中心十分重视设备、技术、人才水平的提升，将皮肤病诊疗技术水平推向了一个全新的高度。历经多年岁月淬励，使得成为华北地区知名的皮肤病医生汇聚之地。
医院现拥有省内较大的高压氧舱，核磁共振〔MRI〕、微晶疤痕治疗机、德国生物共振过敏原检测仪、LED红蓝光动力痤疮治疗仪、伍德检查灯DHLL404M、SS-03型紫外线光疗仪、分子暖疗氦氖激光治疗机、英国WRY-Ⅱ纳米波治疗仪、太空舱等多种现代化检查治疗仪器，确保了一流的皮肤诊疗质量。
上海江城皮肤病医院自建院以来，始终秉承"救死扶伤，医者仁心"的医德理念，多年来成功为皮肤病患者解决疾病的困扰，康复患者遍布辐射至其它省市，对医院的医疗健康事业具有"里程碑式"的意义。132被浏览55547分享邀请回答ichthyosis.org.uk/leaflets/基础知识只翻译重点。What is ichthyosis vulgaris?何为寻常型鱼鳞病？‘Ichthyosis’ is a group of skin conditions characterised by dry, scaly skin and ichthyosis vulgaris (IV) is the most common form of inherited ichthyosis. The severity of IV varies widely from very mild cases of dry skin to severe areas of thickened skin and scaling over the body, arms, legs and face. The condition runs in families, often along with eczema and/or asthma and/or hay fever.鱼鳞病是一组皮肤症状，体现在干燥、鳞片状的皮肤。寻常型鱼鳞病（IV）是遗传性鱼鳞病的最常见类型。其严重程度差别很大，从最轻微的皮肤干燥，到身体/手臂/腿及脸部的严重部位皮肤增厚及鳞片都有。症状有家族性，时常同时有湿疹和/或哮喘和/或枯草热。插入美国Mayo Clinic的资料Ichthyosis vulgaris slows your skin's natural shedding process. This causes chronic, excessive buildup of the protein in the upper layer of the skin (keratin). Symptoms include:常见症状是：Dry, scaly skin干燥、鳞片的批复Tile-like, small scales像拼贴瓷砖那样的小鳞片Scales colored white, dirty gray or brown — with darker-colored scales typically on darker skin白色、脏灰色或棕色的鳞片Flaky scalp片状头皮Deep, painful cracks in your skin深且疼痛的皮肤裂缝The scales usually appear on your elbows and lower legs and may be especially thick and dark over your shins. Most cases of ichthyosis vulgaris are mild, but some can be severe. The severity of symptoms may vary widely among family members who have the condition.鳞通常在肘部和下肢出现，在小腿可能尤为厚且颜色深。通常的寻常型鱼鳞病很不严重。Symptoms usually worsen or are more pronounced in cold, dry environments and tend to improve or even resolve in warm, humid environments.在湿热的环境里会改善甚至消失。When to see a doctor何时就医If you suspect you or your child has ichthyosis vulgaris, talk to your family doctor or a dermatologist. He or she can diagnose the condition by examining the characteristic scales.怀疑有这个病的时候。Also be sure to seek medical advice if the symptoms worsen or don't improve with self-care measures. You may need stronger medication to manage the condition.恶化的时候，自己处理没有改善的时候（可能需要更强效的药物）。IV usually presents in early childhood but an individual’s skin will usually appear normal at birth. The lifelong condition may improve with age and often subside in the warmer summer months, while becoming more severe when the weather is cold and dry in winter.寻常型鱼鳞病通常在幼儿期出现，但在出生时皮肤通常看上去是正常的。虽终生有症状但其可能随着年龄增大而改善，且在夏季消退，冬季严重。What is acquired ichthyosis?何为获得性鱼鳞病？Acquired ichthyosis is a form of ichthyosis which generally appears in adults. It commonly results from natural dryness of the skin in our later years of life but it may rarely be associated with an underlying disease. 获得性鱼鳞病是一种通常在成人中出现的鱼鳞病类型。其通常源自晚年皮肤的自然干燥，但在罕见的情况下也可能与其他疾病相关。There are a number of conditions associated with acquired ichthyosis including nutritional deficiencies, metabolic factors and side effects from some medications. A short list of examples is given below but this is by no means all-inclusive.与获得性鱼鳞病相关的是：营养不良，代谢因素以及其他药品的副作用。以下有一个不完整的列表。The severity of acquired ichthyosis largely depends on the underlying cause but if the cause is removed or the condition is treated, the ichthyosis should improve.获得性鱼鳞病的严重程度源自基础疾病，后者治疗好后鱼鳞病应能改善。Conditions associated with acquired ichthyosis与获得性鱼鳞病相关的条件：o Advancing age年龄增大o Environmental factors: excessive washing, excessive heat, cold windy weather, chlorine from swimming pool, air conditioning环境因素：过度的洗，过度的热，寒冷且风大的气候，游泳池中的氯，空调o Metabolic factors eg thyroid disease, excessive weight loss代谢因素，例如甲状腺疾病，体重过度降低o Vitamin A deficiency缺乏维生素Ao Treatment with nicotinic acid eg to lower cholesterol使用烟酸的治疗（如降低胆固醇时）o Extremely rarely, other serious conditions在非常罕见的情况下的其他原因获得性鱼鳞病的病因Freedberg, et al. (2003). Fitzpatrick's Dermatology in General Medicine. (6th ed.). McGraw-Hill. .据称这个文献说：The development of ichthyosis in adulthood can be a manifestation of systemic disease, and it has been described in association with malignancies, drugs, endocrine and metabolic disease, HIV, infection, and autoimmune conditions获得性鱼鳞病可能与：恶性肿瘤、药物、内分泌及代谢疾病、艾滋病、感染以及自身免疫疾病等原因相关。Causes病因Ichthyosis vulgaris is commonly caused by a genetic mutation that's inherited from one or both parents. Children who inherit a defective gene from just one parent have a milder form of the disease. Those who inherit two defective genes have a more severe form of ichthyosis vulgaris. Children with the inherited form of the disorder usually have normal skin at birth, but develop scaling and roughness during the first few years of life.基因问题。从父母一方处继承一个缺陷基因导致轻度的鱼鳞病；继承两个缺陷基因导致比较严重的寻常型鱼鳞病。（换句话说，作为基因疾病，寻常型鱼鳞病(Ichthyosis Vulgaris, IV)是无法治愈的。但通常可通过控制症状获得良好的预后。）If genetic abnormalities aren't responsible for ichthyosis, it's referred to as acquired ichthyosis. It's usually associated with other diseases, such as cancer, thyroid disease or HIV/AIDS.如果不是基因问题，那么称之为获得性鱼鳞病。通常与其他疾病：癌症、甲状腺疾病或艾滋病有关联。皮肤的护理Bath Oils浴油are solubilising agents designed to disperse in water leaving a fine film over the entire body.溶解在水中，在身上留下薄膜。help to hydrate the skin as well as soften it.有利于润肤及软化皮肤。Ointments (oil/grease)软膏（油脂类）are occlusive and have a softening protective action on the skin.封闭性，软化及保护皮肤。are useful for dry scaling areas.用于干燥有鳞片的区域。are not water soluble and so difficult to wash off.are not suitable for wet/weeping areas of the skin as they seal in moisture and keep the area warm, this may result in further damage to the skin.不适用于皮肤上湿润或流水的区域，因为将会把这些水分封住，导致这些区域更热，导致对皮肤的进一步损害。Creams (water/oil)乳液（水/油性）mix easily with body fluid therefore drainage is not impaired.与体液容易混合，因此不影响排汗。are water soluble and easily washed off.水溶性，因此容易洗掉。are soothing to dry skin.可以缓解干燥皮肤。Keratolytics角质剥脱剂- are preparations and contain salicylic acid, lactic acid and urea’s. They can be absorbed through the skin and must therefore be used under strict medical supervision. 通常含有水杨酸、乳酸或尿素的制剂。可被皮肤吸收，因此必须在严格的医疗指导下使用。Keratolytic agents are used to induce desquamation (shedding) of the horny layer (outside layer) without affecting the function of the epidermis.角质剥脱剂用于引发角质层（外层）的脱屑，而不影响表皮的功能。NOTES说明Part of the reason the skin is dry is because it lacks moisture, therefore the aim is to hydrate the skin as much as possible.皮肤干燥的部分原因是缺乏水分，因此目标是尽可能的滋润皮肤。Using bath emollients will help to soften and hydrate the skin.使用沐浴润肤剂可帮助软化及滋润皮肤。Applying greasy emollients to the entire body after bathing will help to seal in moisture to the outer layer (stratum corneum), minimising cracks and fissures. 在洗澡后全身使用油性的润肤剂有助于锁住皮肤外层（角质层）的水分，最大限度的降低裂纹和裂缝。These emollients should be applied at least 4 hourly by day.这些润肤剂应该每4小时使用一次。The older child and adults may require medicated shampoo’s designed to loosen scale. A fine comb should be used to gently remove the scale. Never be tempted to force the scale off as this can damage the root and can aggravate hair loss.较大的儿童和成人可能需要有lossen鳞片的药用洗发水。用好的梳子轻柔的除去鳞片。永远不要大力去除鳞片，因为其可能损害发根并恶化脱发。In hot weather it may be necessary to discontinue the ointments and change to a cream, as ointments can cause the sufferer to feel uncomfortable and it will also reduce the risk of overheating.炎热天气里需要考虑停用软膏而改用乳液，因为软膏可能会不舒服且造成皮肤过热。Prevention预防There are no guidelines for preventing the development of ichthyosis. However, steps to prevent this condition from getting worse include:目前没有办法预防鱼鳞病的发展。但以下有助已有症状部分避免恶化：Bathing less often避免过度洗澡Applying unscented moisturizer regularly and frequently, especially in winter规律且频繁的使用没有香味的润肤产品。Using only mild soap使用温和的香皂。Avoiding:避免：Harsh soaps避免刺激性香皂。Soaps with scents or perfumes避免有香味的香皂。Skin contact with detergents避免皮肤接触洗涤剂。Cold, dry weather when possible避免干冷气候。Managing the conditions管理症状As yet, there is no cure for IV but the prognosis for the condition is generally very good.虽然对于寻常型鱼鳞病无法治疗，但预后通常是非常好的。Symptoms tend to come and go but continual care with moisturisers should help keep the skin as healthy as possible. 症状可能来来去去，但持续润肤会最大限度的保护皮肤健康。It may also be necessary to avoid nvironmental conditions that can worsen ichthyosis eg excessive washing, dry, cold and windy weather. 应当避免环境伤害：过分的洗、干燥、寒冷及大风的天气。Success of the treatments will depend on the individual and the severity of their condition. What works for one person may not work for another and patients will need to consider different options to find the best treatment for them.对一些人有效的方法不一定对其他人有效。Moisturising creams and skin treatment保湿乳液及皮肤护理It is very important that the skin is kept moisturised at all times and that moisturising creams or ointments are applied frequently. Moisturising agents should be perfume-free and without additives to avoid any allergic reactions. The use of bath oils (not bubble bath or soap) is helpful so that bathing does not cause drying or irritation of the skin and soaking in the bath tends to be more beneficial than taking a shower.皮肤在任何情况下均保持湿润非常重要，应当经常使用保湿乳液或乳膏。Emollients and keratolytic creams which contain urea, and/or lactic acid (see product’s ingredients label for these) can be useful to remove scales. However these should be avoided if the skin is particularly itchy or red because they may irritate the skin.含有尿素或乳酸的润肤剂以及角质剥脱剂对于去除鳞片有作用。但应避免使用在痒或红的皮肤上，否则可能会刺激皮肤。In very severe cases antibiotics can be given to treat secondary infections.在特别严重的情况下，考虑使用抗生素以治疗次级感染。What you can do in the meantimeTo help soothe affected skin:Wash only with mild soaps that have added oils and fats. Avoid strongly scented and antibacterial soaps, which may be too harsh on dry skin.使用温和的香皂。避免使用有强香味的或含有抗菌成分的。Apply moisturizer or lubricating cream while the skin is still moist from bathing. 浴后趁皮肤湿润时使用润肤产品。Choose a moisturizer such as petroleum jelly or one that contains urea or propylene glycol — chemicals that help keep skin moist.考虑使用凡士林或含有尿素或丙二醇的产品，以润肤。耳朵的护理由于耳道的皮肤清洁机理和其他地方的皮肤不同，因此如果耳道中出现鳞片，可能会影响耳道的清洁。这个需要找医生处理。Lifestyle and home remedies生活方式与日常护理Self-help measures may help improve the appearance and feel of damaged skin. Consider these suggestions:Take long soaking baths to soften the skin. Use mild soap. Rub dampened skin lightly with a rough-textured sponge (loofa) or a pumice stone to help remove the scales.泡长的澡，以便软化皮肤。稍微搓一下以便去除鳞片。After showering or bathing, gently pat or blot the skin dry with a towel so that some moisture remains on the skin.洗完别拿毛巾擦太干，留点水在皮肤上。Apply moisturizer or lubricating cream while the skin is still moist from bathing. 擦保湿。Choose a moisturizer with urea or propylene glycol — chemicals that help keep skin moist. Petroleum jelly is another good choice.选择含有尿素或丙二醇的润肤产品。凡士林也不错。Apply an over-the-counter product that contains urea, lactic acid or a low concentration of salicylic acid twice daily. Mild acidic compounds help skin shed its dead skin cells. Urea helps bind moisture to skin.使用含有尿素、乳酸或低浓度水杨酸的OTC产品，每天两次。温和的酸类成分有助于皮肤自然剥脱死皮。尿素帮助保湿。Use a portable home humidifier or one attached to your furnace to add moisture to the air inside your home.在家可开加湿器。Incidence Rates发病率’s no wonder that with so many different kinds of recognized ichthyosis, sometimes it’s hard to accurately diagnose certain individuals. Because many people with milder forms of ichthyosis go undiagnosed (they may figure they just have dry skin and don’t seek special treatment from a dermatologist), and others may be misdiagnosed, exact incidence rates are difficult to calculate. However, the table below shows commonly accepted estimates of incidence rates:可去链接里看发病率图表。This certainly qualifies ichthyosis as a rare disease. A rare or "orphan" disease affects fewer than 200,000 people in the United States.
However, we're hardly alone in being affected by a rare disease.
There are more than 5,000 rare disorders that, taken together, affect approximately 20 million
Americans. One in every 12 individuals in this country has received a diagnosis of a rare disease.大约250人里就有一人为寻常型鱼鳞病。Special diets have been advocated for a few of the rarer syndromes (e.g., Refsum disease), but in general, dietary changes have little or no effect on the ichthyoses. 总体而言，饮食结构和鱼鳞病没有太大关系。Although retinoids are used to treat ichthyosis, taking Vitamin A in excess of normal daily requirements is not recommended.
Excess Vitamin A is toxic and can result in cerebral edema (swelling of the brain) and damage to the liver.
Children can be particularly sensitive to toxic amounts of Vitamin A. 虽然类维生素A被用于治疗鱼鳞病，但过度摄入维生素A不推荐。过度的VA有毒且对肝脏有害，特别是儿童。关于维生素A的摄入Recommended daily allowanceVitamin ADietary Reference Intake:[14]成年男性及女性适当摄入量为：700μg/day上限摄入量为：3000μg/day根据以下资料，我理解换算大致为：1微克μg=3.33国际单位IU因此上限摄入量为=10000单位——也即：国产维生素A软胶囊2粒（5000单位每粒的话）。维生素国际单位与微克的换算有些药物如维生素、激素、抗生素、抗毒素类生物制品等，它们的化学成分不恒定或至今还不能用理化方法检定其质量规格，往往采用生物实验方法并与标准品加以比较来检定其效价。通过这种生物检定，具有一定生物效能的最小效价单元就叫”单位”（u）；经由国际协商规定出的标准单位，称为”国际单位”（IU）。维生素A：1国际单位（IU） = 0.300μg结晶视黄醇 = 0.344μg维生素A醋酸酯 = 0.550μg维生素A棕榈酸酯 = 0.358μg维生素A丙酸酯 = 1 美国药典单位（USP）Vitamin A: 1 IU is the biological equivalent of 0.3 μg retinol, or of 0.6 μg beta-carotene.[6][7][a]Vitamin A is included in most multivitamins, and the U.S. recommended dietary allowance (RDA) for adults is as follows: 900 micrograms daily (3,000 IU) for men and 700 micrograms daily (2,300 IU) for pregnant women 19 years old and older, 770 micrograms daily (2,600 IU); and for lactating women 19 years old and older, 1,300 micrograms daily (4,300 IU).美国推荐的每日摄入量RDS（成人）为：3000国际单位（男性）及2300国际单位（女性）。For vitamin A deficiency, unrelated to xerophthalmia (dry eye), vitamin A has been given at a daily dose of 100,000 IU by mouth or intramuscularly for three days, followed by 50,000 IU daily for two weeks. After two weeks, daily doses of 10,000-20,000 IU have been given for two months.治疗维生素A缺乏症有这么使用的：10万单位口服3天，随后5万单位每天/2周，随后1-2万单位每天/2个月的。吃维生素A有效吗？SYSTEMIC RETINOIDS IN THE MANAGEMENT OF OF ICHTHYOSES AND RELATED SKIN TYPESDermatol Ther. A available in PMC 2014 Jan 8.Published in final edited form as:Dermatol Ther. 2013 Jan-F 26(1): 10.1111/j.12.01527.x.doi:
10.1111/j.12.01527.x这个文献说：AbstractThe term retinoid includes both natural and synthetic derivatives of vitamin A. Retinoid containing treatments have been used since the early Egyptians ~1550BC. Treatment of ichthyosiform disorders with retinoids dates back at least to the 1930’s. Early use of high dose vitamin A demonstrated efficacy but, because vitamin A is stored in the liver, toxicity limited usefulness. 早期使用高剂量维生素A有效果，但是由于损伤肝脏，因此毒性超过治疗效果。Interest turned to synthetic retinoids in an effort to enhance efficacy and limit toxicity.Acetretin, isotretinoin and, in the past etretinate, have provided the most effective therapy for ichthyosiform conditions. They have been used for a variety of ages, including in newborns with severe ichthyosis and for decades in some patients. Careful surveillance and management of mucous membrane, laboratory, skeletal, and teratogenic side effects has made systemic retinoids the mainstay of therapy for ichthyosis and related skin types.图书第48页过度开空调、过度饮酒会加重鳞片形成。第49页大约一半的IV患者有过敏性问题。另一个常见的关联性的症状是keratosis pilaris（毛囊角化病）。鱼鳞病与痤疮最近研究了一下IV与痤疮。治疗痤疮的一些药物，如维A酸、异维A酸，本身也是用于治疗IV的药物，因此用这些药物祛痘可能不会影响到鱼鳞病。这里有个不错的关于鱼鳞病用药的文章——其中明确达芙文Adapalene (Differin(R))、异维A酸(Accutane(R))什么的也是鱼鳞病治疗药物。最后个人感想：1. 1/250的概率，而且不会死人，对生活的影响是有限的，没什么大不了。想开点。从罕见病累积概率来讲，人总得摊上点什么疾病吧，这个比别的病已经好太多了。2. 何况，护肤本来就是应该的。本来就要爱自己。慢性病的逐渐发展就像你身上的倒计时钟，时时再次提醒你珍惜时光、热爱生活。如果我以上有错误或遗漏，或者有任何别的好办法，请留言或私信告诉我吧。大家多交流。谢谢。14244 条评论分享收藏感谢收起}