Lupus bill designed to raise awareness of often-undiagnosed disease
Lupus affects more than 17,000 people living in Connecticut. Odds are, if you ask someone to tell you what lupus is, you'll likely be met with a blank stare.
Lupus is a chronic autoimmune disease that can attack any part of the body.
"There's such a low awareness of lupus in the state," said Lisa Sartorious, president and chief executive officer of the Lupus Foundation of America Connecticut chapter, based in Farmington. "And the population that knows the least about it is the group that's most affected by it -- young women."
Sartorious and other advocates hope that will change with a new law that goes into effect July 1. The law allows for creation of a panel to develop a plan to address gaps in lupus awareness and education. According to the law, the plan would ideally focus on increasing knowledge about the importance of lupus diagnosis among members of the medical community and maintaining and developing a directory of lupus-related health care services.
The panel would include, among others, a lupus patient, a doctor and a member of the Lupus Foundation. Sartorious said the foundation has been involved with the development of the bill since the beginning and thinks it's essential in making lupus education a priority.
"We want people to get diagnosed and get treated," she said. "We want people to know enough (about the disease) to go to their doctors and say `Could I have lupus?' "
Lupus is a difficult and complicated illness that affects each patient differently. It's an autoimmune disease, which means your immune system can't tell the difference between your body's healthy tissue and dangerous invaders like bacteria and viruses. As a result, the immune system attacks and destroys the healthy tissue, causing inflammation, pain and damage. Lupus can affect nearly any part of the body, from skin to joints to internal organs. About 90 percent of those who suffer from lupus are women, most between the ages of 15 and 44.
There's no known cause of lupus and, until recently, no treatment. Earlier this year, the Food and Drug Administration approved the drug Benlysta for treatment of the disease, which many lupus sufferers saw as a major step forward.
Locally, doctors cheered passage of the lupus bill. Dr. Germano Guadagnoli, Bridgeport Hospital chief of rheumatology, said, though he didn't know about the bill "if it's going to enhance public awareness about something that can be serious problem, than it's a great idea."
Reach Amanda Cuda at firstname.lastname@example.org or 203-330-6290. Follow at twitter.com/AmandaCuda.