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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.

La información en esta página ha sido compilada con la ayuda de especialistas en sarcoidosis. Dr R. Coker, Respiratory Medicine, Hammersmith Hospital, London and Dr. K. BechmanDr. J. Galloway, Reumatología, Kings College Hospital, Londres.

¿Qué es la 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 ‘Información’ on the menu bar above.

¿Quién desarrolla la sarcoidosis?

La sarcoidosis a menudo se diagnostica erróneamente como otra cosa y existe un desacuerdo sobre cuántas personas viven con la enfermedad. Sin embargo sabemos que la sarcoidosis es rara. La mayoría de los especialistas están de acuerdo en que aproximadamente 1 de cada 10,000 personas tiene sarcoidosis en el Reino Unido. Cada año en el Reino Unido se diagnostica sarcoidosis entre 3.000 y 4.000 personas.

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 sarcoidosis puede ocurrir a cualquier edad, pero comúnmente afecta a los adultos de 30 o 40 años. 4,833 individuos en nuestra encuesta de la comunidad nos dijeron su edad. Los datos indican que la sarcoidosis es prevalente en todos los grupos de edad, con un 80% de los casos entre 37 y 65 años. La edad promedio informada fue de 50. (Tenga en cuenta que no se trata de edades en el momento del diagnóstico, sino de edades proporcionadas en el momento del informe).

Citado frecuentemente Investigacion americana dice que las personas de herencia africana y escandinava tienen una mayor probabilidad de contraer la enfermedad, lo que implica un elemento genético.

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 está tomando la iniciativa en la financiación de la investigación médica para identificar las causas y encontrar una cura. Leer más sobre SarcoidosisUK Research.

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 sarcoidosis puede afectar casi cualquier parte del cuerpo. Los pulmones y los ganglios linfáticos en el tórax son los más afectados, y afectan a 9 de cada 10 pacientes con sarcoidosis.

Otras partes del cuerpo que pueden estar comúnmente involucradas son la piel, los ojos y los ganglios linfáticos en otras partes del cuerpo.

Las articulaciones, los músculos y los huesos están involucrados en 1 de cada 5 pacientes. Los nervios y el sistema nervioso están involucrados en aproximadamente 1 de cada 20 pacientes. El corazón está involucrado en aproximadamente 1 de cada 50 pacientes.

¿Cuáles son los síntomas de la sarcoidosis?

Los síntomas de la sarcoidosis dependen de la parte del cuerpo afectada. Pueden incluir:

  • tos
  • sentirse sin aliento
  • ojos rojos o dolorosos
  • glándulas inflamadas
  • erupciones en la piel
  • Dolor en las articulaciones, músculos o huesos.
  • Adormecimiento o debilidad de la cara, brazos, piernas.

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

A veces, los síntomas de la sarcoidosis comienzan repentinamente y no duran mucho. En otros pacientes, los síntomas pueden desarrollarse gradualmente y durar muchos años.

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.

Lea más sobre la sarcoidosis ...

Etimología e historia de la sarcoidosis.

La palabra "sarcoidosis" viene del griego. sarcos que significa "carne", el sufijo - (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).

Lee mas: 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)

¿Cómo se diagnostica la 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.

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

Exploraciones 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.

La persectiva

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.

Tratamiento de la sarcoidosis

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.

Los casos crónicos de sarcoidosis generalmente pueden controlarse con medicamentos. En casos raros, algunos pacientes necesitan oxígeno y / o trasplantes de pulmón. Igualmente, el daño al corazón o cerca del mismo puede requerir un marcapasos u otros tratamientos. También pueden ser necesarios otros tratamientos cuando los ojos y la piel se ven afectados por la sarcoidosis. Consulte las páginas específicas utilizando el menú de arriba para obtener más información sobre los tratamientos para tipos específicos de sarcoidosis.

Vida saludable

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.

Por favor contactar a la sarcoidosisUK or your GP for further professional support.

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

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