→ 我得有鱼鳞病该怎么办？
我得有鱼鳞病该怎么办？
健康咨询描述：
我得有鱼鳞病皮肤干很燥外，腿及手臂老是鳞屑，特别到了冬季情况更严重，父母一直带我看病治疗，效果不是很理想，我这病该怎么办。
想得到怎样的帮助：我得有鱼鳞病该怎么办？
其他类似问题
医生回复区
抚顺市中医院&& 主治医师
擅长: 颈肩腰腿痛的诊治，颈椎病，肩周炎，落枕，脊柱小关节
微信扫一扫，随时问医生
&&&&&&鱼鳞病是一组遗传性角化障碍性皮肤疾病，主要表现为皮肤干燥。伴有鱼鳞状脱屑。本病多在儿童时发病，主要表现为四肢伸侧或躯干部皮肤干燥、粗糙，伴有菱形或多角形鳞屑，外观如鱼鳞状或蛇皮状。寒冷干燥季节加重，温暖潮湿季节缓解。易复发。多系遗传因素致表皮细胞增殖和分化异常，导致细胞增殖增加和（或）细胞脱落减少。
擅长: 尖锐湿疣，梅毒，艾滋病，生殖器疱疹，淋病，非淋，阴
微信扫一扫，随时问医生
&&&&&&病情分析：&&&&&&鱼鳞病是一种遗传性皮肤病。冬重夏轻，主要好发于四肢。皮肤粗糙，脱屑，如鳞片&&&&&&指导意见：&&&&&&平时多食新鲜蔬菜和水果，补充各种维生素，鱼鳞病不能根治，只能缓解症状，外用维a酸乳膏和尿素霜治疗。
擅长: 宫颈糜烂、盆腔炎、阴道炎、月经不调、不孕
微信扫一扫，随时问医生
&&&&&&病情分析：&&&&&&鱼鳞病是一组遗传性角化障碍性皮肤疾病，主要表现为皮肤干燥。伴有鱼鳞状脱屑。本病多在儿童时发病，主要表现为四肢伸侧或躯干部皮肤干燥、粗糙，伴有菱形或多角形鳞屑，外观如鱼鳞状或蛇皮状。寒冷干燥季节加重，温暖潮湿季节缓解。易复发。多系遗传因素致表皮细胞增殖和分化异常，导致细胞增殖增加和（或）细胞脱落减少。&&&&&&指导意见：&&&&&&主要为对症治疗，外用保湿剂保持皮肤滋润。部分病人可口服维生素A或维A酸类药物。外用糖皮质激素软膏或维A酸软膏。&&&&&&以上是对“我得有鱼鳞病该怎么办？”这个问题的建议，希望对您有帮助，祝您健康！
微信扫一扫，随时问医生
&&&&&&您好，目前中药治疗鱼鳞病是最安全有效的方法。当然药物的使用及护理的方法会直接影响疗效。如参归润燥搽剂这一类的中药擦剂，在浴后使用会让疗效发挥到最佳。在使用的同时，也应遵循清淡饮食，对于男性而言，烟酒方面，也是应该极力避免的。&&&&&&中药相对西药来说疗效可能要慢一些，但是可以从根本上缓解症状，减小发病几率，所以建议您坚持按疗程使用。
微信扫一扫，随时问医生
称鱼鳞癣 英文名称ichthyosis 就诊科室皮肤科 多发群体儿童 常见发病部位皮肤 常见症状皮肤干燥、脱屑 传染性无
鱼鳞病病因1.寻常型鱼鳞病&&&&&&为具有不全外显率的常染色体显性遗传病。目前认为是mRNA的不稳定，转录后控制机制缺陷所致。&&&&&&2.性联隐性鱼鳞病&&&&&&为X染色体连锁隐形遗传。类固醇硫酸酯酶基因（STS）缺失或突变，造成硫酸胆固醇积聚，角质层细胞结合紧密不能正常脱落，形成鳞屑。&&&&&&3.板层状鱼鳞病&&&&&&系常染色体隐性遗传。基因定位多个位点，包括2q33-35、19p12-q12、定位于14q11TGM1基因发生突变、缺失或插入，至细胞粘连和细胞被膜蛋白交联缺陷。&&&&&&4.表皮松解性角化过度鱼鳞病&&&&&&为常染色体显性遗传病。致病基因与角蛋白1（K1）和角蛋白10（K10）基因突变有关，导致角蛋白的合成或降解缺陷，影响基底层角质形成细胞内张力微丝的正常排列与功能，进而造成角化异常及表皮松解。&&&&&&5.先天性非大疱性鱼鳞病样红皮病&&&&&&为常染色体隐性遗传，由多个基因如脂氧合酶12（R）（ALOX12B）基因、油脂氧化酶3（ALOXE3）基因的突变引起。&&&&&&6.迂回性线状鱼鳞病&&&&&&为常染色体隐性遗传病，是由染色体5p32上的丝氨酸蛋白酶抑制剂Kazal5型（SPINK5）基因突变造成。
微信扫一扫，随时问医生
&&&&&&治疗鱼鳞病主要的目的还是在于缓解患者的症状，通过治疗逐渐的增加患者皮肤的角质层的含水量，逐渐地纠正患者皮肤角化功能正常。可以采用一些全身治疗的办法进行治疗，比如说使用维生素a，或者是使用13－顺维甲酸。有一些药物可以局部使用来治疗鱼鳞病，这种药物可以是鳞康，通过使用这种药物能够增加患者皮肤角质层的水分含量，能够去除患者皮肤上面过度角化遗留下来的物质。有的鱼鳞病患者可能还会伴有其他的皮肤感染，这个时候就要积极使用一些抗菌素类药物。&&&&&&3鱼鳞病患者有一点需要注意那就是在使用维生素a治疗的时候一般都需要大剂量的口服，每天的服用剂量甚至会超过30万u个单位。长期使用这种药物会造成一些不良的副作用，比如说史的患者骨质脱钙，还可能会导致的中毒症状。
疾病百科| 鱼鳞病（别名：蛇皮癣）
挂号科室：皮肤科
温馨提示：平时要加强锻炼，生活方面注意可多饮白开水，服用维生素A。
鱼鳞病是一组遗传性角化障碍性皮肤疾病，主要表现为皮肤干燥。伴有鱼鳞状脱屑。本病多在儿童时发病，主要表现为四肢伸侧或躯干部皮肤干燥、粗糙，伴有菱形或多角形鳞屑，外观如鱼鳞状或蛇皮状。寒冷干燥季节加重，温...
好发人群：无特殊发病群体
常见症状：四肢伸侧或躯干部皮肤干燥、粗糙、伴有菱形
是否医保：医保疾病
治疗方法：药物治疗
参考价格：10.5
参考价格：28
参考价格：49
您可能关注的问题
用药指导/吃什么药好
滋补肝肾，健脾益气，活血通络，祛风润燥。适用于先...
参考价格：￥398
滋补肝肾，健脾益气，活血通络，祛风润燥。适用于先...
参考价格：￥398
您好，虽然我们的工作人员都在竭尽所能的改善网站，让大家能够非常方便的使用网站，但是其中难免有所疏漏，对您造成非常不必要的麻烦。在此，有问必答网向您表示深深的歉意，如果您遇到的麻烦还没有解决，您可以通过以下方式联系我们，我们会优先特殊解决您的问题。
请选择投诉理由
涉嫌广告宣传
无意义提问
非医学类咨询
违背伦理道德
其他投诉理由
涉嫌广告宣传
无意义回复
违背伦理道德
复制粘贴内容
常识性错误
其他投诉理由
如遇紧急情况，请致电400-鱼鳞病的症状有哪些
核心提示：鱼鳞病是一种常见的遗传性皮肤病，多见于出生期的婴儿，在鱼鳞病初期未愈者可能会延长至青年时期。鱼鳞病对于患者的形象有着很大的影响。为了对鱼鳞病有个更直观的印象，我们应该了解一下鱼鳞病的症状表现。
　　鱼鳞病的症状有哪些？鱼鳞病是一种常见的遗传性皮肤病，多见于出生期的婴儿，在鱼鳞病初期未愈者可能会延长至青年时期。鱼鳞病对于患者的形象有着很大的影响。为了对鱼鳞病有个更直观的印象，我们应该了解一下鱼鳞病的症状表现。那么，鱼鳞病的症状有哪些？下面就为大家介绍一下。
　　一、层状鱼鳞病症状表现：
　　出生时或出生后不久发病，鱼鳞病临床表现发展缓慢，可持续终生，部分在婴儿期自愈。全身弥漫性红斑基础上有灰棕色中心黏着、边沿游离的鳞屑，部分鱼鳞病病例可发生连续性板层表皮脱落，约有1/3病例眼睑外翻。
　　二、遗传先天性鱼鳞病样红皮病：
　　这种鱼鳞病临床表现是在出生时或出生后一周内发病，忽然泛发，以四肢屈侧为明显。红斑基础上较厚的棕红色疣状脱屑，婴儿期可伴有大疱。
　　三、联平常型鱼鳞病：
　　这种形式的较少见的鱼鳞病临床表现。出生时或出生后不久发病，但仅见男性。皮损似上述平常型鱼鳞病临床表现。但分布可遍及全身，亦可累及面部及四肢屈侧，唯无掌跖角化，且不随年龄增长而减轻。鱼鳞病临床表现可伴有隐睾和角膜点状混浊。
分享到微信朋友圈
“扫一扫”分享
上海最好的鱼鳞病医院?得了鱼鳞病会给患者带来很大的麻烦，如果处理不当还可能导致鱼鳞病的并发症，例如鱼鳞病侏儒智能障碍综合症，非常麻烦。所以治疗对于鱼鳞病患者来说是有必要且必须的，而且，由于季节变化的因素等，鱼鳞病患者要做相关的预防和护理措施。鱼鳞病有哪些症状 对症祛除小窍门鱼鳞病有哪些症状 对症祛除小窍门泛健康资讯百家号鱼鳞病，是一种遗传性角化障碍性皮肤病，是目前人们日常生活中常见的皮肤病之一，一般好发于青少年时期，并以而同期最为常见。其主要症状可表现为好发于人体四肢、躯干等皮肤部位，往往会使皮肤变得干燥脱屑、形似鱼鳞，蛇皮。并且此症发病有季节特点，通常为冬重夏轻，反复发作。那么，鱼鳞病怎么办？今天就为大家分享对症祛除小窍门。小窍门1、科学用药。针对鱼鳞病这一发生于人体皮肤浅表层的皮肤炎症，使用外用药物最为便捷有效。但是，在此不建议患者使用西医激素类软膏进行治疗，因为激素药物虽然短时间内药效明显，但长期使用难免会对身体产生一定的副作用，还可使患处产生抗药性，不利于鱼鳞病的康复。因此，针对鱼鳞皮肤，一定要科学用药。鱼鳞病可涂抹纯植物的施氏草本霜，一般坚持半个月左右就能完全恢复肌肤嫩滑。小窍门2、食疗改善。食疗也是改善鱼鳞皮肤的一大途径，一般来讲，鱼鳞皮肤病患者平时可以多吃富含维生素的蔬菜及水果，滋养皮肤。例如白菜含有胡萝卜素、维生素C等多种成分。其性味甘、温，具有解热、安神等作用，胡萝卜中含有维生素A，可以补充患者体内维生素A的缺乏，可以有效减轻病情。小窍门3、巧用保鲜膜。患者在清洗患处五分钟之内，可以在皮肤上覆盖一层保鲜膜，能够有效保证水分渗透到皮肤，缓解鱼鳞皮肤的干燥症状。此外，还可以涂抹一些保湿霜、润肤乳，滋润肌肤最后，在改善和祛除鱼鳞皮肤的过程中，患者应该保持一个良好的身心状态，切忌情绪紧张与焦虑。本文由百家号作者上传并发布，百家号仅提供信息发布平台。文章仅代表作者个人观点，不代表百度立场。未经作者许可，不得转载。泛健康资讯百家号最近更新：简介:分享健康知识，传播健康观念。作者最新文章相关文章鱼鳞病患者如何保养皮肤？ - 知乎177被浏览<strong class="NumberBoard-itemValue" title="3,208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。20077 条评论分享收藏感谢收起4230 条评论分享收藏感谢收起