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Information sheet about Behcet Syndrome

Other Names

Adamantiades-Behcet disease; Behcet disease; Behcet triple symptom complex; Behcet’s syndrome; malignant aphthosis; Old Silk Route disease; triple symptom complex.

Categories

Blood diseases; eye diseases; kidney and urinary diseases; musculoskeletal diseases; nervous system diseases; skin diseases.

Signs and Symptoms

Signs and symptoms of Behcet syndrome vary; it is an inflammatory condition that affects many parts of the body. Most commonly it affects the small blood vessels in the mouth, genitals, skin and eyes.

Some of the recorded symptoms are:

  • Painful mouth and genital sores.
  • Painful bumps and sores on the skin.
  • Inflammation of the eye which may cause blurry vision and an extreme sensitivity to light.
  • Joint pain and inflammation.
  • Less commonly it can affect the brain and spinal cord, gastrointestinal tract, large blood vessels, heart, lungs, and kidneys. This can lead to headaches, confusion, personality changes, memory loss, impaired speech, and problems with balance and movement.

Cause/Inheritance

  • Most cases of Behcet syndrome occur where there is no history in the family.
  • The exact cause of Behcet syndrome is unknown. There is a possible association with the HLA-B51 gene.
  • Some people may have a genetic predisposition to the condition, this means that a person may carry a gene for a disease, but it may not result in them having the condition unless something in the environment triggers the disease.
  • Viral or bacterial infections have also been suggested as a possible cause for the condition.

Treatment and Management

There is no cure for Behcet syndrome, however most people with Behcet syndrome can usually control symptoms with proper medication, rest, exercise, and a healthy lifestyle.

The type of medicine and the length of treatment depend on the person’s symptoms and their severity. It is likely that a combination of treatments will be needed to relieve specific symptoms.

For example:

  • Topical medicine, such as rinses, gels, or ointments containing corticosteroids, anti-inflammatory drugs or an anesthetic to relieve pain and discomfort.
  • Medicines taken by mouth to reduce inflammation throughout the body, suppress the overactive immune system and relieve symptoms.

Support Contacts Australia

  • Rare Connect

– Online community for patients and families with this condition to connect with others and share their experiences: https://www.rareconnect.org/en/community/behcet-s-syndrome

– Individuals in Perth with Behcet syndrome: https://www.rareconnect.org/en/posts/782918e6-eee4-4be6-8f82-1b4fdc82b9d9

– Individuals in Australia with Behcet syndrome: https://www.rareconnect.org/en/posts/0d702cf3-e9b7-4659-ba5c-659fb6da8f9e

  • Health Unlocked

-Talk to others with the condition from Perth: https://healthunlocked.com/behcetsuk/posts/1222637/perth-western-australia

Facebook Support

Behcet’s Disease Community https://www.facebook.com/Behcets-Disease-Community-115439175212330/

Bechet’s disease: you are not alone https://www.facebook.com/groups/1693265037568909/

Support Contacts International

American Behcet’s Disease Association http://www.behcets.com/site/c.8oIJJRPsGcISF/b.9145371/k.BD9A/Home.htm

Behcet’s International http://behcetsinternational.com

Autoinflammatory Alliance http://autoinflammatory.org/behcets.php

Research in Australia

A Single Centre Phase II Study Of Haematopoietic Stem Cell Transplantation for Severe Auto-Immune Diseases. (NSW)

Sources

Genetics Home Reference https://ghr.nlm.nih.gov/condition/behcet-disease#diagnosis

National Organisation for Rare Disorders https://rarediseases.org/rare-diseases/behcets-syndrome/

Genetic and Rare Diseases Information Center https://rarediseases.info.nih.gov/diseases/848/behcet-disease

 

Disclaimer: This information is for general use only and is not meant to be a substitute for seeking professional care in the diagnosis, treatment and management of this condition.

Last update May 2018