Timeka Griffin of the University City area was diagnosed with lupus, an autoimmune disease, 19 years ago. She was newly married and in her mid-20s.
Like many, she believes she had the disease for years before her diagnosis. But she and her husband have learned to cope with her lupus, and they have also participated in local support groups.
In the nearly two decades since her diagnosis, she has watched community support increase in the Charlotte area both for those with the disease and their loved ones. And Griffin has attended all but one of the 12 previous North Carolina lupus summits, hosted by the Lupus Foundation of America’s N.C. chapter.
Attendance has increased greatly over the years, too, Griffin said. The summit is offered for those diagnosed with lupus, their caregivers and family, and medical professionals.
“It is refreshing and very hopeful to know that awareness is growing,” said Griffin.
Griffin will be a panelist at the 13th annual N.C. Lupus Summit Jan. 11 at the Hilton Charlotte University Place. She will answer questions about life as a couple after diagnosis.
The Lupus Summit’s primary goal is education, said Christine John-Fuller, president and CEO of the N.C. chapter. A variety of expert physicians and people living with lupus will speak, and the morning will begin with a gentle yoga session provided by Moga Charlotte. Lunch will also be served.
Keynote speaker Cindy Coney lives with lupus. She wrote “The Wild Woman’s Guide to Living with Chronic Illness,” and she is a previous chairman of the national LFA board.
Other expert speakers include Dr. Jane Box of Box Arthritis; Dr. Sheetal Vora of the Levine Children’s Specialty Center; Tai Venuti from Allsup, a disability representation firm; Dr. Charles A. Withers II of NorthEast Rheumatology; certified sexuality counselor Diane Parks; Dr. Mary Etta Moorachian; chef Thomas Carrig; Susan Royster of NC MedAssist; and Dr. Joseph Shanahan of Shanahan Rheumatology & Immunotherapy.
Presentations will arm attendees with knowledge, connections to experts and the reassurance that they are not alone.
Topics covered will encompass clinical trials and understanding the disease – including disability, overlapping diseases, intimacy, nutrition, the cardiopulmonary system and navigating changes in the health care system.
Based on population data, an estimated 45,000 N.C. residents suffer from lupus, according to John-Fuller.
Lupus affects mostly women ages 15-44 and wreaks havoc on various parts of the body, from the skin to vital organs, due to overactive immune functioning. It is a chronic disease with flare-ups and remissions.
Some common symptoms include fatigue, headaches, swollen or painful joints, a butterfly-shaped rash over the nose and cheeks, sensitivity to light, hair loss and anemia. The cause is unknown, and there is no known cure.
According to LFANC, lupus can be called “the great imitator,” because it often appears to be any of a variety of other diseases.
The theme of this year’s lupus summit is “Clues to the Mystery,” which is a play on the North Carolina chapter’s tagline of “Solving the Cruel Mystery” of lupus. John-Fuller said the idea is not to scare those newly diagnosed with lupus, but to communicate how serious the disease is while giving sufferers hope that there are tools and knowledge to help them live a full life despite the diagnosis.
“My biggest piece of advice is to be your own advocate,” said John-Fuller. “Don’t let the fear of the diagnosis define who you are.”
Griffin agreed: “I have lupus, but I don’t allow lupus to have me.”
Griffin’s advises “be active when your body allows you to and eat anti-inflammatory food.” She also said she believes in the power of prayer, in being flexible due to the unpredictable nature of lupus and in sticking to a treatment regimen even if you’re feeling better. Finding a good doctor is also essential.
“You are the professional when it comes to your body,” said Griffin, so it is important to find a physician who listens well.
Griffin is a proponent of support groups, too.
“The chances of meeting others with lupus are slim to none unless you get connected with groups,” she said.