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SARCOIDOSISISTA

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.

Tämän sivun tiedot on koottu sarkoidoosin asiantuntijoiden avulla Dr R. Coker, Respiratory Medicine, Hammersmith Hospital, London and Tohtori K. BechmanTohtori J. Galloway, Reumatologia, Kings College Hospital, Lontoo.

Mikä on sarkoidoosi?

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 ‘Tiedot’ on the menu bar above.

Kuka kehittää sarkoidoosia?

Sarkoidoosi on usein väärin diagnosoitu jotain muuta ja on erimielisyyttä siitä, kuinka monta ihmistä elää kunnossa. Tiedämme kuitenkin, että sarkoidoosi on harvinaista. Useimmat asiantuntijat ovat yhtä mieltä siitä, että noin yhdellä 10 000 ihmisestä on sarkoidoosi Yhdistyneessä kuningaskunnassa. Yhdistyneessä kuningaskunnassa vuosittain diagnosoidaan 3 000-4 000 ihmistä sarkoidoosilla.

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).

Sarkoidoosi voi esiintyä missä tahansa iässä, mutta yleensä se vaikuttaa aikuisiin 30-luvulla tai 40-luvulla. Yhteisön tutkimuksessa 4 833 henkilöä kertoi meille ikänsä. Tiedot osoittavat, että sarkoidoosi on yleinen kaikissa ikäryhmissä - 80% tapauksista on välillä 37 - 65. Keskimääräinen raportoitu ikä oli 50 vuotta. (Huomaa, etteivät ne ole ikäisiä diagnoosin aikana, mutta ikä on ilmoitettu raportin aikaan.)

Usein noteerataan Amerikan tutkimus sanoo, että afrikkalaisen ja skandinaavisen perinnön ihmisillä on suurempi mahdollisuus hankkia ehto, mikä tarkoittaa geneettistä elementtiä.

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.

SarkoidoosiUK ottaa johtavan aseman lääketieteellisen tutkimuksen rahoittamisessa syiden tunnistamiseksi ja parannuksen löytämiseksi. Lue lisää SarcoidosisUK-tutkimus.

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?

Sarkoidoosi voi vaikuttaa lähes mihin tahansa kehon osaan. Rintakehän keuhkot ja imusolmukkeet ovat yleisimmin mukana, ja ne vaikuttavat 9: een 10: stä sarkoidoosista.

Muita kehon osia, jotka voivat olla yleisiä, ovat iho, silmät ja imusolmukkeet muualla kehossa.

Nivelet, lihakset ja luut ovat mukana viidessä potilaassa. Hermot ja hermosto ovat mukana noin 1 potilaalla 20: sta. Sydän on mukana noin 1 potilaalla 50: stä.

Mitkä ovat sarkoidoosin oireet?

Sarkoidoosin oireet riippuvat siitä, mikä osa kehosta vaikuttaa. Ne voivat sisältää:

  • yskä
  • tunne hengästynyt
  • punaiset tai tuskalliset silmät
  • turvonneet rauhaset
  • ihottumia
  • kipu nivelissä, lihaksissa tai luissa
  • kasvojen, käsivarsien, jalkojen tunnottomuus tai heikkous

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

Joskus sarkoidoosin oireet alkavat yhtäkkiä ja eivät kestä kauan. Muilla potilailla oireet voivat kehittyä vähitellen ja kestää useita vuosia.

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.

Lue lisää sarkoidoosista…

Sarkoidoosin etymologia ja historia

Sana "sarkoidoosi" tulee kreikasta sarcο- tarkoitetaan ”lihaa”, suffiksia - (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).

Lue lisää: 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)

Miten Sarcoidosis diagnosoidaan?

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.

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

skannaukset 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).

biopsia 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.

Sarkoidoosin hoito

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.

Kroonisia sarkoidoositapauksia voidaan yleensä hallita lääkkeillä. Harvoissa tapauksissa joillekin potilaille tarvitaan hapen ja keuhkojen siirtoja. Samoin harvoin, sydämen vahingoittuminen tai sen läheisyys voi vaatia sydämentahdistinta tai muita hoitoja. Muita hoitoja voi olla tarpeen myös silloin, kun sarkoidoosi vaikuttaa silmiin ja ihoon. Tarkista tietyt sivut yllä olevan valikon avulla saadaksesi lisätietoa tiettyjen sarkoidoosityyppien hoidoista.

Terveellinen elämä

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.

Ole kiltti ota yhteyttä SarcoidosisUKiin or your GP for further professional support.

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

Samankaltainen sisältö SarcoidosisUK: lta:

Sarkoidoosi ja keuhko

Onko sinulla pulmonaalinen sarkoidoosi? Vaikuttaako sarkoidoosi keuhkoihin. Saat lisätietoja napsauttamalla tätä.

Sarkoidoosi ja iho

Onko sinulla ihosarkoidoosia? Erythema Nodosum, Lupus Pernio ja leesiot ovat yleisiä merkkejä. Lue lisää.

Sarkoidoosi ja silmä

Noin puolet sarkoidoosipotilaista kokee silmäoireita. Lue lisää siitä, miten sarkoidoosi voi vaikuttaa silmään.

Sarkoidoosi ja nivelet, lihakset ja luut

Vaikuttaako sarkoidoosi niveltesi, lihastesi tai luutesi? Saat lisätietoja napsauttamalla alla.

Sarkoidoosi ja hermosto

Sarkoidoosi voi vaikuttaa hermostoon (neurosarcoidosis). Lue lisää napsauttamalla alla.

Sarkoidoosi ja sydän

Sarkoidoosi voi vaikuttaa sydämeen suoraan ja epäsuorasti keuhkojen sarkoidoosin seurauksena. Lue lisää tästä.

Sarkoidoosi ja väsymys

Onko sinulla väsymystä? Etsi oireita, hoitoa ja lisätietoja sarkoidoosista ja väsymyksestä.

Konsulttihakemisto

Haluatko löytää konsultin? Etsi hakemistostamme sarkoidoosin erikoislääkäri tai klinikka lähelläsi.

SarcoidosisUK-tuki

Miten voimme tukea sinua? Lue lisää Nurse Helpline -palvelusta, tukiryhmistä ja online-tuesta.

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