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When 32-year old Ricardo Lee succumbed to complications associated with vasculitis last year, his mother, Olive Creary was devastated.
She recalls that at the time, local doctors knew of no case in Jamaica of anyone dying from the rare but debilitating disease.
Mourning the loss of her only child but determined to draw attention to the condition, Mrs. Creary decided to establish the Ricardo Lee Vasculitis Foundation to promote awareness, assist research efforts and provide support for persons affected by the disease.
“After my son died, I did my research on the disease and invited one of the specialists from the Cleveland Vasculitis Research Centre in the United States to do a presentation at the University Hospital,” she said.
The Foundation, has partnered with Government and private interests to observe Vasculitis Week from May 3 to 9, to raise awareness of the rare but deadly disease, which causes inflammation of the blood vessels, arteries, veins and capillaries, including thickening, weakening, narrowing and scarring. Inflammation can be short-term (acute) or long-term (chronic) and can be so severe that the tissues and organs supplied by the affected vessels do not get enough blood. The shortage of blood can result in organ and tissue damage, even death. There are many types of vasculitis and the condition can affect people of all ages, gender, race and nationalities.
The cause of vasculitis is unknown, but through research and treatment, outcomes have improved significantly over the past 20 years.
Vice Chancellor of the University of the West Indies (UWI) Mona, Professor Nigel Harris, speaking at a press conference held today (May 7) at the New Kingston offices of the Ministry of Youth, Sports and Culture , noted that there is ongoing research by scientists throughout the world to find the cause of the disease, which is often not easily diagnosed.
“These are not that frequent disorders. They are difficult to diagnose and the treatment is also equally difficult and full of problems,” he pointed out.
The Vice Chancellor, who is a rheumatologist, praised the Foundation for being able to facilitate research by bringing the severity of the disease to the attention of the Government, the private sector, and other organisations.
The signs and symptoms of vasculitis vary widely in type and severity. Some are specific to a particular organ and others are non specific causing general aches, pains and fatigue. Organs affected include the skin, joints, lungs, kidneys, gastrointestinal tract, blood, eyes, brain, nerves, sinuses, nose and ears. In Ricardo’s case, it had affected his major organs. The disease is not infectious.
Early diagnosis may help to avoid permanent organ damage. Diagnosis of vasculitis is made by clinical and laboratory tests including blood analysis, urinalysis, chest and sinus X-rays, and other tests as needed. A tissue biopsy is usually the definitive test.
President of the Ricardo Lee Vasculitis Foundation Dr. Michael Banbury, said that the Foundation is committed to educating patients, families, physicians and other health care professionals.
“We have been in association with physicians abroad in vasculitis centres, very high-powered specialists, who have agreed to lend us support, not only for a point of view of educational literature but also support for patients, who are having difficult problems with treatment and diagnosis and/or treatment,” Dr. Banbury informed.
He said that in Jamaica, the most common diseases associated with vasculitis are systemic lupus and rheumatoid arthritis.
The disease is treated with prescription medications with the goal of stopping the inflammation and relieving the symptoms.
The Ricardo Lee Vasculitis Foundation Limited is located at 60 Darley Crescent in Kingston.
Other activities for Vasculities Week include a coin drive on Saturday (May 9) where a number of supporters of the Foundation will be at stoplights seeking donations for the Foundation.
Also, next Tuesday (May 12), there will be a performance at the Phillip Sherlock Centre, UWI by the L’Acadco Dancers. Proceeds will go towards funding the activities of the Foundation, providing education material, as well as assist with sponsoring a speaker on vasculitis to attend a lecture in Rose Hall, St. James.