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Wegener's granulomatosis is an uncommon type of vasculitis that causes inflammation of the blood vessels.  This in turn restricts blood flow to various organs.   It is distinguished from other forms of vasculitis by the presence of granulomas, which are not present in any other form of vasculitis. Most commonly Wegener's granulomatosis affects the kidneys, lungs and upper respiratory tract.  When both lungs and kidneys are affected, the condition is sometimes referred to as generalized Wegener's granulomatosis.  By restricting blood flow to these organs, damage and complications can result.

Besides inflamed blood vessels, Wegener's granulomatosis produces a type of inflammatory tissue known as granuloma, which is found around the blood vessels. Granulomas can destroy normal tissue. It is still unclear what causes Wegener's granulomatosis, but it is not an infection and it is not a type of cancer.  There has been no determination if the condition is genetic.  Wegener's granulomatosis usually affects young or middle-aged adults.  Although it is uncommon in children, it can affect people at any age.

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Without treatment, Wegener's granulomatosis can be fatal, most commonly from kidney failure.

At we believe that Wegener's Granulomatosis may not actually be as rare as many think.  Rather than being rare, it's more often RARELY DIAGNOSED.  Wegener's is often extremely difficult to diagnose because its symptoms are initially difficult to distinguish from the symptoms of many other common diseases.  It is generally only diagnosed after treatment is ineffective for anything else.  Because of its rarity and indistinguishable symptoms, some refer to it as a 'zebra diagnosis' or an 'orphan disease'. was founded to increase awareness of Wegener's Granulomatosis and to provide helpful information to its sufferers and their families.