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關於SARCOIDOSIS

This page contains general information about sarcoidosis – it is a good place to start if you are new to the condition. For more in depth information on specific types of sarcoidosis (e.g. affecting lungs, eyes, skin etc.) please use the menu above.

Every case of sarcoidosis is unique; you should always consult your doctor about your treatment plan. The information below is based on best practice and evidence but should not be taken as a substitute for medical advice.

此頁面上的信息是在結節病專家的幫助下編制的 Dr R. Coker, Respiratory Medicine, Hammersmith Hospital, London and K. Bechman博士 & J. Galloway博士,風濕病學,倫敦國王學院醫院。

什麼是結節病?

Sarcoidosis is a condition where lumps called granulomas develop at different sites within the body. Granulomas are made up of clusters of cells involved in inflammation. If many granulomas form in an organ, they can prevent that organ from working properly.

Sarcoidosis can affect many different parts of the body. It often affects the lungs but can also affect the skin, eyes, joints, nervous system, heart and other parts of the body.

Please read more information on different types of sarcoidosis by selecting the relevant page from the drop-down menu under ‘信息’ on the menu bar above.

誰發展了結節病?

結節病經常被誤診為其他因素,並且對於有多少人患有這種病症存在分歧。但是我們知道結節病是罕見的。大多數專家都認為,英國每10,000人中就有1人患有結節病。每年在英國,大約有3,000到4,000人被診斷患有結節病。

Sarcoidosis is prevalent in both men and women as well as all major ethnicities. There has been some research suggesting that it is slightly more prevalent in women than men. Our own research agrees with that – in SarcoidosisUK’s online community survey, 69% of respondents were female and 31% were male (7,002 participants).

結節病可以在任何年齡發生,但通常影響30或40歲的成年人。我們社區調查中的4,833人告訴我們他們的年齡。數據表明結節病在所有年齡組中都很普遍 - 80%的病例在37到65歲之間。報告的平均年齡為50歲。(請注意,這些不是診斷時的年齡,而是報告時提供的年齡。)

經常引用 美國研究 他說,非洲和斯堪的納維亞遺產的人有更大的機會感染這種疾病,這意味著遺傳因素。

What Causes Sarcoidosis?

The exact cause of sarcoidosis is not known. It probably involves a precise combination of genetic and environmental factors. The condition does run in some families. So far, a single factor causing sarcoidosis has not been identified.

結節病UK正在率先為醫學研究提供資金,以找出原因並找到治療方法。了解更多 結節病英國研究.

A number of websites claim to understand the causes of sarcoidosis and will sell you a cure. Please always consult your doctor before considering an alternative therapy.

What Parts of the Body are Affected?

結節病幾乎可以影響身體的任何部位。胸部的肺和淋巴腺最常見,影響10例結節病患者中的9例。

可能通常涉及的身體其他部位是身體其他部位的皮膚,眼睛和淋巴腺。

5個患者中有1個涉及關節,肌肉和骨骼。大約20名患者中涉及神經和神經系統。 50名患者中約有1人患有心髒病。

結節病的症狀有哪些?

結節病的症狀取決於身體的哪個部位受到影響。它們可以包括:

  • 咳嗽
  • 感到氣喘吁籲
  • 紅色或痛苦的眼睛
  • 腫脹的腺體
  • 皮疹
  • 關節,肌肉或骨骼疼痛
  • 面部,手臂,腿部的麻木或虛弱

Patients with sarcoidosis may feel tired and lethargic (fatigued), lose weight or suffer with fevers and night sweats. 

有時,結節病的症狀突然開始,並且持續時間不長。在其他患者中,症狀可能逐漸發展並持續多年。

Some people don’t have any symptoms at all and are told they have sarcoidosis after having a routine chest X-ray or other investigations.

閱讀更多關於結節病...

  • 結節病常見問題 – developed by SarcoidosisUK with the help of the SarcoidosisUK Helpline Nurses, SarcoidosisUK Patient Council and specialist consultants.
  • 結節病的優秀學術概述,關於風濕性疾病的EULAR教科書,(2015),第18章,第2節,第493頁。(由EULAR提供:請訪問 EULAR網站 閱讀整章。)
  • 結節病的患者信息,英國Thoratic Society,Thorax(2008); 63,補充V.

語源學和結節病史

“結節病”這個詞來自希臘語 sarcο- 意思是“肉體”,後綴 - (e)中IDO meaning “resembles”, and -sis, a common suffix in Greek meaning “condition”. Therefore the whole word can be translated as something like “a condition that resembles flesh”. 

Sarcoidosis was first described in 1877 by English dermatologist Dr. Jonathan Hutchinson as “a condition causing red, raised rashes on the face, arms and hands”. Between 1909 and 1910 uveitis in sarcoidosis was first described. By 1915 it was first emphasised, by Dr. Schaumann, that it was a systemic condition (affecting the whole body).

閱讀更多: Definition and history of sarcoidosis (Sharma, 2005). 

Definition of Sarcoidosis

Sarcoidosis is famously hard to define. This is partly because of how complicated the condition can be and partly because of the lack of any known cause. SarcoidosisUK’s definition is at the top of this page. Below are some other definitions to help you more easily understand and explain sarcoidosis.

Common definition (use with friends/family/employer):

Sarcoidosis is a condition that can affect any part of the body, most often the lungs. Clumps of cells called ‘granulomas’ stop the affected organ(s) working properly. There is no known cause or cure. It affects everyone differently and the symptoms depend on the organ(s) affected. In most cases, sarcoidosis can be managed by medication and goes away after a few months or years. In the long-term it can lead to serious organ damage.

Clinical definition (use with healthcare professionals):

Sarcoidosis is a systemic granulomatous disease that primarily affects the lung and lymphatic systems of the body. A diagnosis of the disorder usually requires the demonstration of typical lesions in more than one organ system and exclusion of other disorders known to cause granulomatous disease. The appropriate therapy for the disorder also has not been well defined for all patients. Most importantly, the cause of the disorder is still unknown.

(ATS, ERS and WASOG Joint Statement on Sarcoidosis, 1999)

Official definition (for legal/official purposes):

Sarcoidosis is a multisystem disorder of unknown cause characterized by the formation of immune granulomas in involved organs. The lung and the lymphatic system are predominantly affected, but virtually every organ may be involved. Other severe manifestations result from cardiac, neurological, ocular, kidney or laryngeal localizations.

(World Health Organisation, International Classification of Diseases, 11th Revision (ICD-11), June 2018)

如何診斷結節病?

Sarcoidosis is difficult to diagnose because the symptoms often resemble other diseases. There is no single or specific test to diagnose sarcoidosis. 

A detailed history and examination by your doctor is the most important first step in diagnosing sarcoidosis. They will determine which parts of your body may be affected.

Blood tests Your doctor may arrange blood tests to look for signs of inflammation, to check your kidney and liver function, and your calcium levels. They may also check a marker in your blood called angiotensin-converting enzyme (ACE), which is sometimes raised in patients with sarcoidosis.

If your doctor suspects your lungs may be affected, they will usually arrange a chest X-ray and breathing tests (spirometry).

掃描 Your doctor may also arrange imaging scans (CT scan or PET CT scan) to look for other parts of your body that may be affected but might not be causing you any symptoms. The scans will look for inflammation (granulomas).

活檢 In order to help make a definite diagnosis of sarcoidosis a sample of tissue (a biopsy) is taken from one of the areas of inflammation (granuloma) using a bronchoscopy.

As sarcoidosis can affect many different parts of the body, your doctor may ask other specialists (who specialise in the part of your body affected by sarcoidosis) to look after you as well. SarcoidosisUK has further information on all the different types of sarcoidosis, please use the menu above to find the best information for you.

展望

Sarcoidosis gets better without treatment in most patients (around 60%). In others, the condition persists and may require some treatment.

In the minority of patients that develop a more serious form of the disease, more aggressive and prolonged treatment is sometimes required.

A much smaller proportion of patients present with life-threatening symptoms, particularly in those with pulmonary fibrosis (lung scarring) or heart or neurological involvement.

治療結節病

There is currently no known cure for sarcoidosis.

Treatment is often necessary for patients whose sarcoidosis is causing severe symptoms or is preventing the affected organ(s) from functioning normally. Sometimes simple painkillers (paracetamol or non-steroidal anti-inflammatory such as ibuprofen) may help to ease the symptoms.

The drugs used to treat sarcoidosis do so by reducing inflammation in the body. These are known as immunosuppressants. The most commonly used drugs are corticosteroids. These can be taken as a tablet (prednisolone) or given at a higher dose via a vein (methylprednisone). Treatment with corticosteroids is often required for at least 6 to 24 months.

Sometimes corticosteroids may not be completely effective, or cause side effects. Other immunosuppressants may be used, either alone or in combination, to help reduce the steroid dose. These medications include Methotrexate, Azathioprine and Mycophenolate.

結節病的慢性病例通常可以通過藥物控制。在極少數情況下,一些患者需要氧氣和/或肺部移植。同樣很少,心臟或心臟附近的損傷可能需要心臟起搏器或其他治療。當眼睛和皮膚受結節病影響時,也可能需要其他治療。請使用上面的菜單查看特定頁面,了解有關特定類型結節病治療的更多信息。

健康生活

Sometimes patients’ symptoms may suddenly get worse (‘flare-up’). This may be triggered by stress, illness or nothing recognisable. Make sure you eat healthily, pace yourself, talk to friends and family and recognise mental health problems.

聯繫SarcoidosisUK or your GP for further professional support.

Page last updated: August 2019. Next review: August 2021.

來自SarcoidosisUK的相關內容:

結節病和肺

你有肺結節病嗎?結節病是否會影響您的肺部。點擊這裡了解更多。

結節病和皮膚

你有皮膚結節病嗎?結節性紅斑,紅斑狼瘡和病變是常見症狀。閱讀更多。

結節病和眼睛

大約一半的結節病患者會出現眼部症狀。了解更多關於結節病如何影響眼睛的信息。

結節病和關節,肌肉和骨骼

結節病會影響您的關節,肌肉或骨骼嗎?點擊下方查看更多信息。

結節病和神經系統

結節病可以影響神經系統(神經結節病)。點擊下方閱讀更多內容。

結節病和心髒病

結節病可直接或間接地影響心臟,因為肺部結節病。在這裡閱讀更多信息。

結節病和疲勞

你經歷過疲勞嗎?查找有關結節病和疲勞的症狀,治療和更多信息。

顧問目錄

你想找個顧問嗎?使用我們的目錄查找您附近的結節病專科醫生或診所。

結節病UK支持

我們怎能支持你?有關我們的護士幫助熱線,支持小組和在線支持的更多信息。

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