Hoping to aid in that process, the Lupus Foundation of America Georgia Chapter is hosting the Living With Lupus Symposium at the Clarence Brown Conference Center on Saturday from 10 a.m. to 2 p.m.
The free event is a public service performed by the nonprofit organization to help newly diagnosed lupus patients, family members and friends as well as those wishing to learn more about the disease. The foundation conducts seven similar events each year around the state and is making their first trip to Cartersville this weekend.
"It's geared toward people living with lupus, their family and friends," said Program Director Sheri Emond. "It's a family disease because it effects every aspect of daily life. We find that at our symposiums, 50 percent of our audience is family or friends of people with lupus so they can learn more about it, so they can understand what the patient is going through"
The cause of lupus is still unknown, but its devastating effects have been well documented. With lupus, a person's immune system cannot tell the difference between foreign substances and healthy tissues. This causes pain, inflammation and damage in various parts of the body.
"For most, it is a constant fatigue and pain but it's a pain that doesn't show. It's called the invisible disease," Emond said. "Oftentimes, you'll say to someone, 'I have lupus.' And they say, 'Well, you don't look sick.' So, therefore they minimize what they're going through.
"It can effect internal organs. It can effect the heart, the kidneys, the lungs, your blood, your brain, your joints. So, a lot of times they're severely fatigued but they also have major organ involvement."
Lupus can be difficult to detect and is often overlooked by patients attempting to self-diagnose. The disease is treatable with medication and the Lupus Foundation of America Georgia Chapter has been working in recent years to increase awareness for those who think they may be suffering from lupus.
Anyone can have lupus, it is not contagious, but women of child-bearing age, typically between 15 and 44, are more likely to be diagnosed. Although men, children and teenagers of any background can develop lupus, certain ethnic groups are at a higher risk, including those of African-American, Asian, Hispanic/Latino, American Indian and Pacific Island descent.
This initiative, to educate the undiagnosed, has been spearheaded with the circulation of an informational brochure of which more than 60,000 copies have been disseminated across the state in the past two years.
"It's meant to be the first piece of information that a newly diagnosed or not-yet-diagnosed patient would see. What we're trying to do is get the women in child-bearing years who wakes up feeling tired, maybe her hair is thinning, maybe her joints hurt -- to consider, could this possibly be lupus? And to point her in the direction of a doctor, to go to your internalist for more testing," Emond said. "And then if they do have lupus, to point them back to our foundation for more resources
"We want them to consider, could it be lupus. We really believe that an early diagnosis can help them have a better-managed disease activity and mitigate the possibility of major organ involvement."
The Living With Lupus Symposium will be held Saturday from 10 a.m. to 2 p.m. at the Clarence Brown Conference Center, a site Emond praised as "phenomenal" for its handicap accessibility. The symposium will be broken into three seminars with sessions lead by topical experts. Speaking on nutrition and lupus will be Roland Maye, Dr. Kelly Weselman will speak on understanding lupus and Dr. Mohammad Kamran will discuss treating lupus. After each session, the floor will be open for questions from the audience. A free lunch will be provided for registered guests.
For more information, visit www.tiny.cc/lupusgeorgia or call 770-333-5930. To register for Saturday's event online, visit www.tiny.cc/lupussymposium.