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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.

Les informations sur cette page ont été compilées avec l'aide de spécialistes de la sarcoïdose Dr R. Coker, Respiratory Medicine, Hammersmith Hospital, London and Dr K. Bechman Et Dr J. Galloway, Rhumatologie, Hôpital Kings College, Londres.

Qu'est-ce que la Sarcoïdose?

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.

Qui développe la sarcoïdose?

La sarcoïdose est souvent confondue avec autre chose et il y a désaccord sur le nombre de personnes vivant avec la maladie. Cependant, nous savons que la sarcoïdose est rare. La plupart des spécialistes s'accordent pour dire qu'environ 1 personne sur 10 000 est atteinte de sarcoïdose au Royaume-Uni. Chaque année au Royaume-Uni, environ 3 000 à 4 000 personnes reçoivent un diagnostic de sarcoïdose.

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).

La sarcoïdose peut survenir à tout âge, mais affecte généralement les adultes de 30 à 40 ans. Dans notre enquête sur les communautés, 4 833 personnes ont indiqué leur âge. Les données indiquent que la sarcoïdose est prévalente dans tous les groupes d'âge - 80% des cas ayant entre 37 et 65 ans. L'âge moyen déclaré était de 50 ans. (Veuillez noter qu'il ne s'agit pas d'âges au moment du diagnostic, mais fournis au moment du rapport.)

Fréquemment cité Recherche américaine affirme que les personnes d'ascendance africaine et scandinave ont plus de chances de contracter la maladie, impliquant un élément génétique.

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 prend les devants en finançant la recherche médicale pour identifier les causes et trouver un traitement curatif. En savoir plus sur Recherche SarcoïdoseUK.

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?

La sarcoïdose peut toucher presque n'importe quelle partie du corps. Les poumons et les ganglions lymphatiques situés dans la poitrine sont les plus impliqués, touchant 9 patients sur 10 atteints de sarcoïdose.

Les autres parties du corps susceptibles d'être touchées sont la peau, les yeux et les ganglions lymphatiques ailleurs dans le corps.

Les articulations, les muscles et les os sont impliqués chez 1 patient sur 5. Les nerfs et le système nerveux sont impliqués chez environ 1 patient sur 20. Le cœur est impliqué chez environ 1 patient sur 50.

Quels sont les symptômes de la sarcoïdose?

Les symptômes de la sarcoïdose dépendent de la partie du corps touchée. Ils peuvent inclure:

  • la toux
  • se sentir à bout de souffle
  • yeux rouges ou douloureux
  • glandes enflées
  • éruptions cutanées
  • douleur dans les articulations, les muscles ou les os
  • engourdissement ou faiblesse du visage, des bras, des jambes

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

Parfois, les symptômes de la sarcoïdose commencent soudainement et ne durent pas longtemps. Chez d'autres patients, les symptômes peuvent se développer progressivement et durer de nombreuses années.

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.

En savoir plus sur la sarcoïdose…

Étymologie et histoire de la Sarcoïdose

Le mot «sarcoïdose» vient du grec sarcose signifiant “chair”, le suffixe - (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).

Lire la suite: 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)

Comment diagnostique-t-on la sarcoïdose?

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.

Poumons 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).

Biopsie 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.

Les perspectives

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.

Traitement de Sarcoïdose

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.

Les cas de sarcoïdose chronique peuvent généralement être contrôlés par des médicaments. Dans de rares cas, certains patients ont besoin d'oxygène et / ou d'une greffe de poumon. De manière tout aussi rare, les dommages au cœur ou à proximité peuvent nécessiter un stimulateur cardiaque ou d'autres traitements. D'autres traitements peuvent également être nécessaires lorsque la sarcoïdose affecte les yeux et la peau. Veuillez vérifier les pages spécifiques en utilisant le menu ci-dessus pour plus d'informations sur les traitements pour des types spécifiques de sarcoïdose.

Mode de vie sain

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.

S'il vous plaît contacter SarcoidosisUK or your GP for further professional support.

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

Contenu connexe de SarcoidosisUK:

Sarcoïdose et le poumon

Avez-vous une sarcoïdose pulmonaire? La sarcoïdose affecte-t-elle vos poumons? Cliquez ici pour en savoir plus.

Sarcoïdose et la peau

Avez-vous une sarcoïdose cutanée? Erythema Nodosum, Lupus Pernio et Lesions sont des signes courants. Lire la suite.

Sarcoïdose et l'oeil

Environ la moitié des patients atteints de sarcoïdose présentent des symptômes oculaires. Découvrez comment la sarcoïdose peut affecter les yeux.

Sarcoïdose et les articulations, les muscles et les os

La sarcoïdose affecte-t-elle vos articulations, vos muscles ou vos os? Cliquez ci-dessous pour trouver plus d'informations.

Sarcoïdose et le système nerveux

La sarcoïdose peut affecter le système nerveux (neurosarcoïdose). Cliquez ci-dessous pour en savoir plus.

Sarcoïdose et le coeur

La sarcoïdose peut affecter le cœur directement et indirectement à la suite d'une sarcoïdose dans les poumons. Lire plus d'infos ici.

Sarcoïdose et fatigue

Vous ressentez de la fatigue? Trouvez des symptômes, un traitement et plus d’informations sur la sarcoïdose et la fatigue.

Répertoire de consultants

Voulez-vous trouver un consultant? Utilisez notre annuaire pour trouver un spécialiste de la sarcoïdose ou une clinique près de chez vous.

SarcoidosisUK Soutien

Comment pouvons-nous vous soutenir? Trouvez plus d'informations sur notre ligne d'assistance aux infirmières, nos groupes de soutien et notre support en ligne.

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