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OM SARCOIDOS

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.

Informationen på denna sida har sammanställts med hjälp av sarkoidospecialister Dr R. Coker, Respiratory Medicine, Hammersmith Hospital, London and Dr K. BechmanDr J. GallowayReumatologi, Kings College Hospital, London.

Vad är Sarcoidosis?

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 ‘Information’ on the menu bar above.

Vem utvecklar sarkoidos?

Sarcoidos är ofta feldiagnostiserad som något annat och det är oenighet om hur många människor lever med tillståndet. Men vi vet att sarkoidos är sällsynt. De flesta specialister är överens om att omkring 1 av 10 000 personer har sarkoidos i Storbritannien. Varje år i Storbritannien diagnostiseras cirka 3 000 till 4000 personer med sarkoidos.

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).

Sarcoidos kan uppträda vid vilken ålder som helst, men påverkar vanligtvis vuxna i 30-årsåldern eller 40-talet. 4 833 personer i vår samhällsundersökning berättade för oss deras ålder. Data indikerar att sarkoidos är vanlig i alla åldersgrupper - 80% av fallen är mellan 37 och 65. Den genomsnittliga rapporterade åldern var 50 år. (Observera att dessa inte är åldrar vid diagnos men åldrar som tillhandahålls vid rapportens gång.)

Ofta citerade Amerikansk forskning säger att människor i afrikanskt och skandinaviskt kulturarv har större chans att komma på villkoret, vilket innebär ett genetiskt element.

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.

SarcoidosisUK tar ledningen i att finansiera medicinsk forskning för att identifiera orsakerna och hitta ett botemedel. Läs mer om SarcoidosisUK Forskning.

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?

Sarcoidos kan påverka nästan vilken del av kroppen som helst. Lungorna och lymfkörtlarna i bröstet är vanligtvis involverade, vilket påverkar 9 av 10 patienter med sarkoidos.

Andra delar av kroppen som kan vara vanligt förekommande är hud, ögon och lymfkörtlar någon annanstans i kroppen.

Sammanhang, muskler och ben är involverade i 1 av 5 patienter. Nerverna och nervsystemet är involverade i ungefär 1 av 20 patienter. Hjärtat är involverat i cirka 1 av 50 patienter.

Vad är symtomen på sarkoidos?

Symtomen på sarkoidos beror på vilken del av kroppen som påverkas. De kan innehålla:

  • hosta
  • känna andan
  • röda eller smärtsamma ögon
  • svullna körtlar
  • hudutslag
  • smärta i leder, muskler eller ben
  • domningar eller svaghet i ansiktet, armarna, benen

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

Ibland börjar symtomen på sarkoidos och börjar inte länge. I andra patienter kan symtomen utvecklas gradvis och varar i många år.

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.

Läs mer om sarkoidos ...

Etymologi och historia av sarkoidos

Ordet "sarkoidos" kommer från grekiska sarcο- betyder "kött", suffixet - (e) 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).

Läs mer: 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)

Hur diagnostiseras Sarcoidosis?

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.

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

scans 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).

Biopsi 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.

Outlook

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.

Behandling av sarkoidos

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.

Kroniska fall av sarkoidos kan vanligtvis kontrolleras av läkemedel. I sällsynta fall behöver vissa patienter syre- eller lungtransplantationer. Lika sällan kan skador på eller i närheten av hjärtat kräva en pacemaker eller andra behandlingar. Andra behandlingar kan också vara nödvändiga när ögonen och huden påverkas av sarkoidos. Kontrollera de specifika sidorna med menyn ovan för mer information om behandlingar för specifika typer av sarkoidos.

Sund livsstil

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.

Snälla du kontakta SarcoidosisUK or your GP for further professional support.

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

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