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Lupus patients call for increased funding and research

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Lupus. It’s a condition that’s gaining awareness, yet many are still left in the dark about its ins and outs.

Lupus is a chronic autoimmune disease that can damage any part of the body. The body cannot tell the difference between foreign invaders and the body’s healthy tissues. The signs and systems can last for many years. One cannot “catch” lupus and there is currently no cure for lupus.

“The body is in a war with itself and it breaks down over time,” said Leigh Hinkle, director of development, Lupus Foundation of America, Indiana Chapter.

Unfortunately no two lupus patients have the same symptoms, but the condition is usually characterized by a butterfly shaped rash on the cheeks, sores, ulcers in the nose or mouth, joint pain and swelling, extreme fatigue, high fevers that last for several weeks, hair loss, memory loss, chest pains, loss of sensitivity in the extremities or sensitivity to light.

Among the different types, discoid lupus affects only the skin while systemic lupus is more serious and affects not only the skin, but other parts of the body such as the joints, liver or brain. Drug-induced lupus is caused by taking certain types of medication, while neonatal lupus can occur in the fetus of a woman with lupus. Most sufferers, however, have systemic lupus.

Sounds like a lot of different diseases? That is one of the biggest challenges lupus sufferers face – lupus is similar to other diseases and there is no specific test to produce a solid diagnosis.

People of all races and ethnic groups can develop lupus, however, 90 percent of sufferers are women. It’s speculated that lupus is linked to hormones, heredity and environmental factors.

Lupus is three times more common in African-American women than white women, occurs at a younger age and is generally more severe in Blacks.

It is estimated that nationwide one in a half million people have lupus; 33,000 in Indiana; and 7,400 in Central Indiana.

“Lupus ebbs and flows. There’ll be times where (patients) can go into a flare where the disease gets worse. They can also go into remission. Our goal is to educate patients on the signs and symptoms, to have a good relationship with their doctor to keep them in remission as long as possible,” said Hinkle.

Those with lupus should protect themselves from the sun, eat a well-balanced diet, exercise regularly and moderately, not smoke, get plenty of rest, and talk to a physician when planning to get pregnant.

Lupus sufferers face many challenges, but none more important than the need for advancements in new medications and funding for research.

“We haven’t had an FDA-approved drug in 50 years,” said Ericka Sanders, spokesperson for Lupus Foundation of America Indiana Chapter. “People don’t know about lupus. It’s an illness that people are unsure about and the women who have lupus, they don’t talk about it. When asked ‘what is that,’ sometimes they don’t quite understand it themselves.”

Federal funding for lupus research has not kept pace with other diseases such as Alzheimer’s disease and even Fibromyalgia due to the unpredictability of lupus and the undetermined number of those who are impacted by lupus.

There are only three drugs currently approved to treat lupus, however there is a drug called Benlysta that has gone through its second round of clinical drug trials therefore is eligible for approval by the Food and Drug Administration. Drugs that are available have been shown to help lupus but have not been specifically developed for the condition.

To further advocate for lupus advancement, the Lupus Foundation of America, researchers and average Americans participate in Advocacy Day each March in Washington, D.C.

“Not only are we advocating for increased research, but we’re pushing for a Surgeon General’s report on lupus and how it impacts individuals and the community,” said Hinkle. “Because lupus breaks down the body and there aren’t effective treatments, we estimate one in five lupus patients end up on disability. From a cost perspective, that’s an issue for everyone.”

Sanders encourages sufferers, their families and those who simply want to help to talk about the condition more frequently as well as do their part on a local level.

Local chapters provide resources for lupus patients and families, information, referrals, literature, support groups, and events and activities among others. The Lupus Foundation of Indiana is now in the process of moving its headquarters to Indianapolis and increasing its volunteer base.

“Every day they feel different. I can see someone on Monday (who are) in good spirits and come Wednesday, they’re too tired or sick,” said Sanders. “That’s why we encourage more family members to help us.”

The Lupus Foundation is grateful and excited about new developments in lupus, however until a cure is found, their work is not done.

For more information on the Lupus Foundation of America, call (800) 948-8806 or visit www.lupus.org. For more information on the Lupus Foundation of America, Indiana Chapter, call (317) 506-5786, e-mail leigh@lupusindiana.org or visit www.lupusindiana.org.

2010 Lupus Foundation of America,

Central Indiana events

Jan. 19 – Central Indiana support group meeting

Jan. 27 – Walk for Lupus Now of Central Indiana, 2010 Walk committee kick-off

Feb. 18 -March 25 – Living a Healthy Life with Chronic Conditions class

May 1 – Living Well with Lupus Symposium

For more information on the Lupus Foundation of America, Indiana Chapter, call (317) 506-5786, e-mail leigh@lupusindiana.org or visit www.lupusindiana.org.

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