Lupus: An Overlooked Disease

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Lupus: An Overlooked Disease

More than 1 million Americans and at least 5 million people worldwide have a form of Lupus, according to the Lupus Foundation of America.

Those numbers are even more shocking when comparing the number of breast cancer cases recorded by Center for Disease Control at 220,097 cases in 2011. More women are being diagnosed with a form of Lupus than breast cancer.

Ninety percent of all cases diagnosed are women, with higher rates among African Americans and Native Americans.

The autoimmune disease can be diagnosed as early as 3 years of age, but more commonly is found from ages 15 to 44.

The most common signs of Lupus are repeated bouts of flu like symptoms with aching and swelling muscles and joints. Other symptoms include extreme fatigue, chest pains, hair loss, mouth or nose ulcers, sensitivity to light, and a butterfly rash across the nose and cheeks.

Like other autoimmune disorders, Lupus attacks healthy skin tissue, resulting in inflammation. Because it may erode organ tissue, Lupus can result in death. With early diagnosis and proper treatment, most patients can live a full life.

The Lupus Foundation of Oklahoma focuses on education and awareness, support groups, and raising funds for research.

“We are the first point of contact for women who are diagnosed with the disease,” said Mannix Barnes, chief executive officer and president of the Oklahoma group. “They’re trying to find solutions and we try to point them in the right direction. We do health fairs, symposiums and support groups. We need more people getting involved, more money for research to find a cure.”

Newly diagnosed patients are overwhelmed by the devastating ripple effect of symptoms and other illnesses: arthritis, kidney failure, pleurisy, heart conditions, even blood vessel injury and seizures.

Support groups help families cope with the new normal: constant doctor appointments, missed work, medication and therapies, and interpersonal changes in family dynamics.

The side effects of steroids, a common treatment, are particularly difficult for women.

“They can go from being in the best shape of their life to swelling and hair loss. It affects their outer appearance and it’s devastating. If you look at celebrity Tony Braxton five years ago to now, she looks different,” said Barnes.

Medication and natural therapies help control some of the symptoms.

“Some people have tried gluten free and had some success, but others reported no impact on them. Steroids might help one person but not another. Benlysta helps about 25 percent of people, but it’s around $30,000 a year and not everyone has that kind of insurance or can afford that,” said Barnes.

There is hope for a cure and Barnes said that hope is right here in Oklahoma.

“We work hand-in-hand with the Oklahoma Medical Research Foundation, one of the leading research institutes in the nation and probably the leader in finding a cure. OMRF works on a daily basis to find a cure for Lupus. We’ve got some of the best research scientists around and I really believe if we do find a cure, it will be here in Oklahoma because of OMRF,” he said.

May was Lupus awareness and advocacy month.

“Lindsay Harris did our speech for the legislature and you could have heard a pin drop, it was that impactful,” Barnes said. “We try to do our part at the legislature in diverting funds to the OMRF, to educate legislators. We try to put a face in front of them and I believe they understand it more since we began speaking with them 5 years ago. They want to help.”

The Oklahoma Lupus Foundation was instrumental in the Oklahoma Lupus License Plate Revolving Fund, which allows funds from Lupus support license plates to go to research for a cure.

The first Saturday in June is their annual walk at the Zoo to raise funds which allow the organization to mail materials to newly diagnosed patients, maintain support groups, and continue their education efforts.

“We’re a really small organization but the impact we’ve had in Oklahoma is amazing. The number of members we have and people who depend on us to put on support groups and symposiums has been helpful to folks,” said Barnes.

To donate or for more information, visit oklupus.org or call 405-225-7510.

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