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About Central Nervous System Vasculitis (CNSV) 

CNSV is an extremely rare, autoimmune-like, inflammatory disease. Its cause is not known. The blood vessels in the brain (or, much more rarely, the spinal cord) become so damaged that both the blood vessels and brain cells are destroyed. The result is a wide range of neurological problems, many of them severe.

People with CNS Vasculitis face serious disabling symptoms such as head pain, confusion, paralysis, mental changes, fatigue, impaired cognition, sensitivity to overstimulation, and a host of other neurological problems.

CNSV is very difficult to diagnose and treat. Diagnosis is a matter of eliminating other conditions that it mimics. Unfortunately, there is no direct method for detecting CNSV, other than a brain biopsy which may give a false negative. Treatment is with corticosteroids and immunosuppressives, often over a long period of time.

There is virtually no research into discovering better methods of diagnosing and treating Central Nervous System Vasculitis.

What is a rare disorder?

A rare or "orphan" disease affects fewer than 200,000 people in the United States. There are more than 6,000 rare disorders that, taken together, affect approximately 25 million Americans. One in every 10 individuals in this country has received a diagnosis of a rare disease. ยน
Central Nervous System Vasculitis is one of those RARE diseases that fall under the umbrella of the National Organization of Rare Diseases (NORD).

National Organization for Rare Diseases (NORD) on line http://www.rarediseases.org

 

 

 
 

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