帮助患有身体和心理健康状况的孩子充分利用学校的生活

青少年特发性关节炎(JIA)

幼年特发性关节炎(JIA)是一种疾病,大约影响每1名1000岁以下儿童中的16名

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青少年特发性关节炎(JIA)的原因

We don't know what causes JIA.我们不知道是什么原因导致了JIA。 It may be a combination of environmental and genetic factors.它可能是环境和遗传因素的结合。

It is an autoimmune condition, meaning the body's immune system attacks part of a person's own body (in this case the joints) creating inflammation where it is not needed.这是一种自身免疫性疾病,这意味着人体的免疫系统会攻击人体的一部分(在本例中为关节),从而在不需要的地方产生炎症。 Inflammation of the joints causes them to become swollen, stiff and painful.关节发炎使它们变得肿胀,僵硬和疼痛。 Any number of joints in the body can be affected.体内任何数量的关节都会受到影响。

有几种不同类型的JIA

  • Oligoarthritis – Most common type, often but not always, mild.寡关节炎–最常见的类型,经常但并非总是轻度。 Affects 4 or less joints.影响XNUMX个或更少的关节。
  • 多关节炎–影响5个或更多的关节,通常包括手,脚趾,手腕,脚踝,臀部,膝盖和下巴的较小关节。
  • Enthesitis-related – In addition to the joints, this also causes inflammation and pain where the tendon connects to the bone (this is known as enthesitis).与肠炎有关–除了关节之外,这还会在腱连接到骨骼的地方引起炎症和疼痛(这被称为肠炎)。 May also affect the pelvis and back.也可能影响骨盆和背部。
  • Psoriatic – Linked to a skin condition call psoriasis.银屑病–与称为牛皮癣的皮肤病有关。 Often affects fingers and toes.通常会影响手指和脚趾。 Maybe changes to nails.也许会变指甲。
  • Systemic – Often linked with a fever, rash and generally feeling unwell.全身性–通常与发烧,皮疹和一般不适感有关。 Joint signs may come later.联合征兆可能稍后出现。

There is no specific test to diagnose JIA.没有诊断JIA的特定测试。 A diagnosis is made if a person has had symptoms for 6 weeks or more, the person is under 16 years old and all other causes have been ruled out.如果一个人有XNUMX周或更长时间的症状,该人未满XNUMX岁并且排除了所有其他原因,则可以进行诊断。

JIA的症状

  • Swollen, stiff and painful joints.关节肿胀,僵硬和疼痛。 Affected joints may be warm to touch and can appear discoloured.受影响的关节可能摸起来很温暖,并可能变色。 Joint stiffness particularly occurs first thing in the morning.关节僵硬尤其是在早晨发生。
  • There will be times when a young person's condition is controlled and times when there are flares of the condition.有时会控制年轻人的病情,有时还会爆发病情。 Flares are unpredictable and can happen at any time.耀斑是无法预测的,随时可能发生。
  • The condition can go into remission but may continue into adult life.该病可以缓解,但可以持续到成年生活。 It is very difficult to predict the course of the disease in a given individual.很难预测给定个体的疾病进程。

JIA的并发症

  • JIA与一种称为葡萄膜炎的疾病有关。 Uveitis is inflammation in the eye.葡萄膜炎是眼睛发炎。 It is usually asymptomatic in the early stages, but can be sight threatening if left untreated.它通常在早期无症状,但是如果不加以治疗可能会威胁视力。 All children with HIA are regularly screened for this condition.定期对所有患有HIA的儿童进行筛查。
  • Inflammation of the joints can ultimately lead to joint damage which is irreversible.关节发炎最终会导致不可逆的关节损伤。 Treatments for arthritis aim to control the symptoms in the short term but also prevent joint damage in the longer term.关节炎的治疗旨在在短期内控制症状,但在长期内防止关节损伤。

贾的治疗

  • JIA有许多不同的治疗方法。 These include:-这些包括:-
  • 非甾体抗炎药(NSAIDS)–包括布洛芬,双氯芬酸
  • Corticosteroids – either orally, intravenously (via a drip over a few days) or directly into the joint by an injection.皮质类固醇–口服,静脉内(几天内滴注)或通过注射直接进入关节。 If oral steroids taken for a long period they can have side effects including putting on weight, cushingoid appearance (round moon face), and mood changes.如果长期服用口服类固醇激素,可能会产生副作用,包括体重增加,类丘疹样外观(圆月脸)和情绪变化。
  • Disease Modifying Anti-Rheumatic Drugs (DMARDS) – help reduce inflammation, includes Methotrexate and Sulphasalazine.疾病改良抗风湿药(DMARDS)–有助于减轻炎症,包括甲氨蝶呤和舒法他嗪。 Methotrexate – can be given either orally or injection.甲氨蝶呤–可以口服或注射。 Some people taking methotrexate experience side effects including nausea.服用甲氨蝶呤的一些人会出现包括恶心在内的副作用。 These drugs may take up to twelve weeks to take effect.这些药物最多可能需要十二周才能生效。
  • Biologic Therapies – Also help to reduce inflammation and reduce risk of joint damage.生物疗法–还有助于减少炎症并减少关节损伤的风险。 These drugs tend to be added in to a young person's treatment if a DMARD is not being effective enough.如果DMARD不够有效,这些药物往往会被添加到年轻人的治疗中。 There are lots of different typed of biologic drugs and they can be given in a variety of ways including injection or intravenously via a drip.生物药物种类繁多,可以通过多种方式给予,包括注射或滴注静脉内。

支持青少年特发性关节炎(JIA)的学生

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As noted above, this is a relapsing-remitting condition characterised by exacerbations known as flares.如上所述,这是一种复发发作的疾病,特征是发作加剧。 Young people may therefore need support to be put in place at times when their condition is in flare, and less, or even no support at times of good control.因此,年轻人可能需要在病情爆发时就地提供支持,而在良好控制时甚至需要更少甚至没有支持。 The severity of the disease is highly variable and each young person will be affected in different ways and to a different degree.该疾病的严重程度变化很大,每个年轻人将以不同的方式受到不同程度的影响。 Support for students with JIA therefore needs to be flexible and tailored to the needs of the individual.因此,为JIA学生提供的支持必须灵活且适合个人需求。

以下是一些常见的挑战,并提出了解决这些挑战的方法的建议:

轮回学校

  • 学生可能需要一些策略,例如电梯通行证,超时通行证和使用储物柜。
  • 如果年轻人因自己的药物(例如恶心/胃部不适)而出现任何副作用,或者难​​以上厕所,可能会有所帮助。
  • 如果需要,年轻人可以进入可以休息的地方。
  • 应该允许年轻人到教室走动,以避免僵硬。
  • 使所有员工了解年轻人的状况是有帮助的。

PE

  • 建议并鼓励进行体育锻炼。 年轻人应该尝试参加体育运动,但是他们可能会觉得做些短的运动会或在运动会中休息会有所帮助。 可能需要调整活动以适应年轻人的需求,在大多数情况下,这比不参加更为可取。
  • 早晨往往比较棘手,刚度是主要特征,如果可能的话,在一天的晚些时候进行体育锻炼会有所帮助。
  • We would encourage integration in PE, and the use of inclusive activities to enable the young person to get the benefits of PE at their own level.我们将鼓励融入体育教育,并鼓励开展包容性活动,使年轻人能够从自己的水平上受益于体育教育。 If, despite such measures, they are still unable to join in, they may have a physiotherapy home exercise programme they could do within the session.如果尽管采取了这些措施,他们仍然无法参加,他们可能会在会议期间进行理疗家庭锻炼计划。
  • 儿童和年轻人经常报告他们的关节受到寒冷天气的影响,因此,在寒冷天气下,在户外穿运动服的底裤可能对PE有所帮助,或者在天气特别恶劣的情况下考虑在室内使用。

校服

  • 一些孩子可能在固定方面挣扎,换上和脱下他们的制服,可能需要额外的时间/支持。
  • Some children may struggle to get their footwear on due to swelling and/or the need for insoles.一些孩子可能由于肿胀和/或需要鞋垫而难以穿鞋。 In children and young people with foot and ankle disease, appropriate supportive footwear is often essential to manage symptoms, this may not always be possible within the school uniform guidelines and therefore, alternative supportive footwear should be allowed.在患有脚和脚踝疾病的儿童和年轻人中,通常需要适当的支撑鞋来控制症状,这在校服指南中可能并不总是可能的,因此,应允许使用其他支撑鞋。

用餐时间

  • 如果长时间站立困难,则通过以进入队列的最前面
  • May require help with carrying school tray.可能需要帮助携带学校托盘。 In some cases adaptive cutlery maybe used.在某些情况下,可以使用自适应餐具。

考试措施

  • 年轻人可能需要额外的检查措施,尤其是如果手和/或手腕受到影响。
  • Untimed rest breaks, extra time, use of a laptop or scribe can be considered.可以考虑不定时休息,额外时间,使用笔记本电脑或划线员。 These measures should be discussed with school and put in place through the exam board if required.这些措施应与学校讨论,并在需要时通过考试委员会制定。

手写

  • 如果手和/或手腕受到影响,长时间的手写可能会很痛苦。
  • 年轻人可能会受益于使用笔记本电脑或抄写员。
  • 如果可能的话,可以分发讲义以最大程度地减少写作量,这可能会有所帮助。
  • 年轻人可能会发现较粗的铅笔/笔更易于使用。

缺课

  • 年轻人可能需要预约数家医院。
  • 有些治疗可能需要在医院安排一天的常规输液,这可能会影响上学率。
  • 年轻人经常在上学时热衷于做工作,以防止他们学习落后,因此,建立一种确保如何完成工作的方法很有用。

药物治疗

  • 年轻人可能在学校需要止痛药,这使他们能够留在学校而不是送回家。
  • 有些药物会影响年轻人的免疫系统,因此在学校中可能需要告知父母任何疾病,例如水痘。
  • 一些条件和药物意味着年轻人更容易在阳光下晒太阳,因此需要采取防晒措施。

心理/疼痛/疲劳

  • Living with a long term health condition can have an effect on a young person's mood and how they see themselves.长期处于健康状态的生活可能会影响年轻人的情绪以及他们如何看待自己。 Prolonged absences can cause difficulty with peers and friendship groups.长时间的缺席会给同伴和友谊团体带来困难。
  • Young people often report a lack of understanding by others (both peers and staff), particularly as the condition is often not visible.年轻人经常报告缺乏他人(同龄人和工作人员)的理解,特别是因为这种病常常不可见。 Flares are unpredictable and therefore a young person may appear fine one day but struggle the next.耀斑是无法预测的,因此,年轻人一天可能看起来不错,但第二天会挣扎。 We do not know what causes a flare but sometimes they can be triggered by stress.我们不知道是什么导致了耀斑,但有时它们可​​能会因压力而触发。
  • Sleep can be affected due to pain and discomfort.疼痛和不适会影响睡眠。 Many young people report fatigue and difficulty with concentration at school.许多年轻人报告在学校集中注意力时感到疲劳和困难。
  • 如果年轻人在学校遇到任何问题,知道他们也可以和谁交谈对年轻人很有用。

修学旅行

  • It is worth discussing any forthcoming school trips with the young person/parents prior to the trip to ensure the person is going to manage.值得在旅行之前与年轻人/父母讨论任何即将进行的学校旅行,以确保该人将要管理。 Rest breaks may need to be incorporated into the day.当天可能需要休息一下。  

更多信息

  • https://www.versusarthritis.org/
    领先的关节炎慈善机构提供的全面信息,其中包括针对年轻人需求的信息和建议部分 

  • http://www.jia.org.uk  
    Information on Juvenile idiopathic arthritis, what it is, how it's managed and living with the condition.关于青少年特发性关节炎的信息,它是什么,如何治疗以及如何适应这种情况。 Including information for those working in schools.包括为在学校工作的人提供的信息。 

谢谢

非常感谢Sheffield Children's NHS Foundation Trust的高级职业治疗师Catherine Dunbar撰写了本节。

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