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Awareness urged on rare disease

Published:Friday | April 30, 2010 | 12:00 AM

More Jamaicans are being encouraged to become aware of the group of disorders caused by vasculitis.

This call was made at a public forum staged by the Ricardo Lee Vasculitis Foundation at the Girl Guides Association of Jamaica headquarters in St Andrew on Monday.

Although only 15 Jamaicans are known to have the disease, president of the Ricardo Lee Vasculitis Foundation, Dr Michael Banbury, said it was important for the public, as well as all medical practitioners, to have a full grasp of the condition.

"The purpose of the foundation, basically, is to make the public aware that the disease exists, and also to educate them about the various types of diseases and the treatment that exists for it locally, and also to let them know there is treatment not only in Jamaica, but abroad as well,"

According to www.vasculitisfoundation.org, vasculitis is an inflammation of the blood vessels, arteries, veins or capillaries. When such inflammation occurs, it causes changes in the walls of blood vessels, such as weakening and narrowing that can progress to the point of blood-vessel blockage.

Symptoms

General symptoms of vasculitis include fever, weight loss, bloody coughs and arthritis.

While one method of identifying the disorder - biopsy - is available in Jamaica, Dr Karel De Ceulaer said persons with the disease have other options.

"The more diagnostic procedures that are available, the quicker and easier diagnosis is made. We have a situation that we have to send specimen abroad, because we can't do them there. The consequence is an increased cost to the patient," he said.

The immunofluorescence biopsy and anti-neutrophil cystoplasmic antibody blood tests are not performed in Jamaica.

"With rare diseases, what is going to happen is that we might decide not to do the test because it is too expensive, and we can miss the diagnosis.

"As you know, vasculitis is a rare disease. If you test for it, you might have a negative result; if it's very expensive, then you might not do it and then you might miss the case," he explained.

De Ceulaer will today deliver a speech on the disorder to students at the University of the West Indies, Mona, in one of several events for Vasculitis Week.