In 2008, Melissa Carter noticed she had a rash on her face and concluded it was an allergic reaction. Things took a turn for the worse when she began to have swollen hands and stiff joints.
“I would get out of bed in the morning and my knees would hurt. I’d have to get up bent over like an old person. It would take an hour for me to get myself together. No one understood what was going on,” explained Carter, who was 17 years old at the time. “The rash made me so self-conscious and I couldn’t explain to people what was really going on.”
She eventually found herself in the hospital. Tests were done and doctors concluded that Carter had lupus.
“I didn’t know what lupus was. I was so depressed,” she said. “I was embarrassed to tell people what I had and felt like I was the only person with this disease. Once I was able to learn about it I wasn’t embarrassed anymore.”
Catherine Hutcherson’s story is similar to Carter’s. In 2005 she too experienced facial redness and rash-like symptoms. She was working at a dermatology office at the time and was encouraged to get a biopsy.
“Lupus was the farthest thing from my mind,” Hutcherson said, who is now in her 50s.
While increases in awareness is growing, many people are still in the dark about what this chameleon-like disease is all about.
Lupus is a type of autoimmune disease. In these diseases, the immune system turns against parts of the body it is designed to protect. Lupus can affect many parts of the body, including the joints, skin, kidneys, heart, lungs, blood vessels, and brain.
Furthermore, lupus is characterized by periods of illness, called flares, and periods of wellness or remission. Although people with the disease may have different symptoms, during flares people experience extreme fatigue, joint pain, headaches, skin rashes and low-grade fevers among other symptoms.
“It basically feels like you’ve got the flu,” said Dr. Susan Kiray, an internal medicine physician at IU Health. “Lupus is hard to diagnose because the symptoms are common to other illnesses and conditions.”
Both Carter and Hutcherson are currently in remission but experience headaches and joint pain during flares.
Kiray said that diagnoses for lupus begins with a blood test. If tests come back positive, additional blood tests are done. There are also 11 criteria for lupus and in order to be diagnosed, patients must meet four of the 11 symptoms.
The exact cause of lupus is unknown and is likely to be due to a combination of factors. It is suspected that a person’s genetic make-up and exposure to certain trigger factors may provide the right environment for lupus to develop. Some triggers can range from antibiotic drugs to pregnancy to the common cold.
Experts say more women get lupus than men and among lupus sufferers, African-American and Hispanic women are more likely to have active disease and serious organ system involvement. There is currently no cure for lupus and it is difficult to estimate how many people in the U.S. have the disease, because symptoms vary widely and its onset is often hard to pinpoint.
Robert Wood Johnson IV of the Johnson and Johnson company is working to change the fate of lupus sufferers.
After Johnson’s daughter was diagnosed with lupus, he noticed there was little to no research on the condition. Because of this, he was inspired to found the Alliance for Lupus Research (ALR).
The ALR works diligently to support research that works to find better treatments, prevention and a cure for lupus.
“What’s unique about ALR is that the board of directors overrides the cost of pretty much everything. Any money that’s donated to the ALR goes directly toward research,” said Jennifer Kappes-Belcher, a local ALR volunteer.
To date, the ALR has committed more than $72 million to lupus research. Through the organization, funds go towards advances such as removing barriers to treatments, studies that search to find how genes and lupus coincide, and understanding risk factors.
ALR recently announced funding a new study to identify lupus susceptibility to genes in multiple ethnicities including African-Americans who are three times more likely than Caucasians to have the disease.
One of the most important developments supported by the ALR in lupus research has been last year’s Food and Drug Administration approval of lupus drug Benlysta. This drug is the first to specifically target lupus and the first new medicine for lupus in 50 years. The ALR was instrumental in the getting Benlysta on the market.
“People would take anti-malarial drugs, steroids and chemotherapy drugs. These are all meant to suppress the immune system, but the problem with them is that they help, but have a lot of potential side effects,” said Kiray. “The side effects can be significant, but honestly, without these medications, quality of life would be terrible.”
Lupus is an incredibly challenging disease which is why the ALR hosts annual walks around the country to increase awareness about lupus and fundraise for research that puts lupus sufferers one step closer to a cure.
The 4th Annual “Walk With Us” walk will be Sept. 15 at the Michael Carroll Track & Soccer Stadium at IUPUI. Registration begins at 9 a.m. and the walk begins at 10 a.m.
“Bill and I were astounded by how many people have lupus and how few recent scientific advances had been made. Better diagnosis and treatment is sorely needed. We are supporting the Indianapolis walk to help the crucial, groundbreaking work that will defeat this disease,” said Rose Mays, corporate chairperson for the “Walk With Us” walk in Indianapolis. William Mays, chairman and founder of Mays Chemical Co. is also a corporate chairperson.
Donations are accepted and will go towards ALR’s mission, however the walk is free. There is no need to sign up and if people want to participate, all they need to do is come out and support.
“Individuals can walk as much as they want,” said Kappes-Belcher. “It’s a great family event. We have a DJ and lunch after the walk. This disease can be isolating so this is a great way for people with lupus to connect with others who have lupus.”
The formation of an Indianapolis walk was partly made possible by Kiray who also suffers from lupus.
“I was diagnosed in 1999. It was scary, but I have been fortunate thus far. I’ve had side effects from the medicines, but I haven’t had any internal organ problems,” said Kiray. “I can’t keep a full time job, but I’m able to still work three days a week.”
With advances in medicine and people on the front lines fighting for a cure, many believe that lupus sufferers will overcome this debilitating disease and shield future generations from lupus.
“The more we invest in research and science, the more of a chance we have of preventing and curing (lupus),” said Kappes-Belcher.
For more information about the Alliance for Lupus Research, call 800-867-1743 or visit lupusresearch.org. For information about Walk with Us to Cure Lupus, visit walk.lupusresearch.org. For general information about lupus, contact the Lupus Foundation of America at lupus.org.
Indianapolis Walk With Us
When: Sept. 15
Where: Michael Carroll Track & Soccer Stadium at IUPUI
Time: Registration begins at 9 a.m.; walk begins at 10 a.m.
Cost: FREE!
Info: 866-925-5257 or walk.lupusresearch.org
Common lupus symptoms
Butterfly shaped rash on the face
Red, raised rash
Sensitivity to sun or light
Oral ulcers
Arthritis
Inflammation of the lining around the lungs or heart
Kidney disorder
Neurological disorder
Blood disorder
Immunologic disorder
Abnormal antinuclear antibody blood test
5 forms of lupus
• Systemic lupus erythematosus (SLE) – a traditional form of lupus.
• Discoid lupus erythematosus – a chronic skin disorder.
• Subacute cutaneous lupus erythematosus – skin lesions that appear on parts of the body exposed to sun.
• Drug-induced lupus – a form of lupus caused by medications.
• Neonatal lupus – a rare disease that can occur in newborn babies of women with SLE.
