Lupus Symposium aims to reach broad spectrum
by Matt Shinall
Feb 10, 2013 | 1558 views | 0 0 comments | 14 14 recommendations | email to a friend | print
With a disease as mysterious as lupus, patients and caregivers — even doctors and pharmacists — can often be left in the dark on how to recognize and treat its symptoms. The Living with Lupus Symposium series invites anyone with interest in the matter to learn more about this devastating and often misunderstood disease.

The Cartersville symposium will take place Saturday at the Clarence Brown Conference Center from 10 a.m. to 2 p.m. and organizers encourage anyone with an interest in learning more about lupus to attend.

Cartersville resident Penny Fowler was diagnosed six years ago, but it took many years for her to find out why her health was deteriorating. Education and awareness are now part of her mission to help others, before they spend years searching for answers like she did.

“It took me about 16 years to get it diagnosed. It’s a hard disease to diagnose. It mimics just about everything under the sun,” Fowler said. “It takes on average, I would say, just from talking to people, at least five or six years to get diagnosed. I was told I had chronic fatigue immune disfunction. That’s what they called it for years. Only when my doctor retired and I had to change doctors did the doctor I’m using now do scratch tests and lab work and he immediately said I needed to see a specialist in Atlanta.

“I said, ‘OK. Can you tell me what’s wrong with me?’ He said, ‘I think you have lupus.’ I had never heard the word in my life before my diagnosis.”

Lupus is a chronic, autoimmune disease causing the body’s immune system to attack its own cells resulting in severe joint and muscle pain, physical exhaustion, skin rashes, fever, and can lead to organ failure and death. There is no cure for lupus and there is no definitive answer for what causes the disease.

Anyone can develop lupus, but it typically affects young women of childbearing age. People of color are more likely to develop the disease, but it has affected people of nationalities from around the world.

“I don’t have any organ involvement yet, mine’s just my joints and my bones and I have a lot of skin involvement. There’s a lot of mental fatigue. That’s why, two years ago, I had to leave my job after being there 22 years. That was a hard thing to do, but I couldn’t perform my job anymore,” Fowler said. “I’m very stiff, I’m tired. I just can’t get going most days. I have a lot of cognitive issues, I can’t remember things sometimes. But the biggest issue is that my joints hurt so bad. Sometimes I can’t even open a water bottle. I can’t turn the lids on things.

“It has changed my total quality of life to less than half of what I used to be able to do. If I know I have something big coming up — like we had a new grandchild coming last August — I knew it was almost time, so I stayed in bed for a week resting so that I would have the energy to stay at the hospital.”

The Lupus Foundation of America estimates 1.5 million people in America are living with lupus, although the organization fears the number may be much higher due to the number of undiagnosed cases. More than 16,000 new cases are diagnosed each year and that rate continues to rise, which the Centers for Disease Control and Prevention attributes to increasing awareness.

The Lupus Foundation of America, Georgia Chapter is sponsoring Saturday’s symposium to help spread awareness of the disease and educate those who have been diagnosed.

“The Lupus Foundation of America, Georgia Chapter is the only statewide resource for those living with lupus and provides thousands of Georgians with expanding educational programs, advocacy and awareness,” stated the LFA Georgia in a press release. “Presentations will be given by leading physicians covering critical topics including Understanding Lupus, Gentle Exercise, Depression and more. Question and answer time will be held in every session. This program is provided free to people living with lupus and their families.”

Fowler encourages anyone with interest in the disease to attend the symposium, but if someone who suspects they may have symptoms of lupus would like a more intimate setting to learn about the disease, a local support group meets the first Tuesday of each month at Cartersville Medical Center.

“After I was diagnosed six years ago with lupus, I got involved with a support group and now I’m the facilitator for the Cartersville support group,” Fowler said. “We meet once a month to offer support for one another and if anyone is new looking for information on lupus, I have some literature. If there is any additional information they need, I also can contact the chapter office in Smyrna.”

The Living with Lupus Symposium will take place Saturday, Feb. 16, at the Clarence Brown Conference Center, 5450 Ga. Highway 20, from 10 a.m. to 2 p.m. The symposium is free, but event organizers ask all guests to register in advance to ensure an accurate head count for a lunch provided at no cost for those attending. Guests can register at www.lupusga.org or call 770-333-5930.