Robert Held CTLatinoNews.com
Lupus is an autoimmune inflammatory disease that currently affects over 17,000 people in the state. It causes the immune system to mistakenly attack the body’s own healthy cells and tissue; symptoms of the disease include fatigue, hair loss, painful or swollen joints, fever, skin rashes and kidney problems. It is a chronic disease that attacks different parts of the body and has no known cause and no known cure. A prompt diagnosis is essential in preventing early organ damage and death.
Nationally, the U.S. Department of Health and Human Services’ (HHS) Office on Women’s Health (OWH) distributed new radio public service advertisements this past May to alert Hispanic women.
In Connecticut, the Lupus Foundation of America has begun to try and raise awareness about the disease in the state’s Latino community. Its CEO and President, Michael Tommasi, has met with Hispanic community leaders to help spread the word.
There is no cure for Lupus, and those who have it, live with the symptoms their whole lives. These symptoms can be costly and take a toll not just on those who have it, but their friends and family as well. “The diagnosis process for Lupus can be costly. It takes a toll on the immediate family and sometimes may take 2-3 years for a proper diagnosis. During the time, patients are unable to work or take care of their children, so it impacts their economic responsibilities,” said Tommasi.
The Lupus Foundation does provide assistance to those suffering from the disease. “We want to provide a better life for those who are diagnosed by having a strong support system to provide confidence. We discuss medications, provide educational programs, help inform clinicians and provide advocacy by working with legislatures,” said Tommasi.
There is one thing Tommasi wants everyone to understand about Lupus.
“Lupus is a very real disease and can be very damaging. It stays with you for your whole life. I want to make people understand the negative impact it has on lives and the pain it causes,” said Tommasi.
Tommasi said he is always looking for volunteers to help the organization. For more information on the Connecticut Chapter of the Lupus Foundation of America visit: www.lupusct.org or contact their office in Farmington at (860) 269-6240.