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Empowering those dealing with lupus

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Imagine waking up in the morning feeling extremely fatigued although you’ve gotten a full night’s rest. Imagine having swollen legs and ankles on both sides simultaneously. Imagine having sores in your mouth or on your skin that won’t heal. Imagine having unexplained hair loss.

What was just described to you is what some lupus sufferers go through daily.

“A lupus patient doesn’t know from day to day how they’re going to feel. Lupus is a very difficult condition and no two lupus sufferers have the same symptoms or severity of the condition,” said Leigh Hinkle, director of development, Lupus Foundation of America Indiana Chapter.

Lupus is an autoimmune disease capable of damaging virtually any part of the body, including the skin, heart, lungs, kidneys and brain. Nine out of 10 people with lupus are women. It typically affects women ages 15 to 45. Women of color are twice as likely to have lupus and more severe forms of the disease than their white counterparts. It’s estimated that of the 34,000 Hoosiers living with lupus, 7,800 reside in Central Indiana.

A chronic condition, there is no cure for lupus. In its most severe form, lupus can cause kidney, heart and lung failure, strokes, heart attacks and death.

Symposium May 1

The Lupus Foundation of America Indiana Chapter will host the inaugural Living Well with Lupus Symposium from 8:30 a.m. to 1 p.m. on May 1 at the Indianapolis Marriott East to provide resources to help patients better deal with their condition.

There will also be resources for family and friends to help them get a true understanding of what it’s like to have lupus.

In addition to the erratic symptoms and staggering statistics, what further troubles lupus sufferers is there have been very few developments in treating or curing the disease, and there have not been any new prescription drugs to fight it that have been approved by the Food and Drug Administration in the last 51 years.

Due to increased awareness and funding, said Hinkle, a new drug is going forward to the FDA called Benlysta.

“In the last year alone great strides have been made in overcoming this complex, life-diminishing, and life-threatening disease,” said Sandra C. Raymond, president and chief executive officer of the Lupus Foundation of America. “While we have seen expanded federal funding for lupus, positive clinical trials and increased public awareness of the disease, there is much more we must do to build upon this momentum.”

For these reasons, Hinkle and her team want to have the symposium to raise Hoosiers’ consciousness about lupus, but also to provide a support network for sufferers and their families.

The day will begin with a workshop conducted by Dr. Louise Goggans, a nutritionist.

“We want to take complete care of the patient and not just focus on medications and doctors,” said Hinkle. “We want patients to make good decisions about what they eat so they can maximize the energy they have.”

For the newly diagnosed or those who want to know the basics of lupus, Dr. Steven Neucks will be conducting Lupus 101.

During the symposium, there will be two break-out sessions, one for caregivers or family members led by author Sara Gorman, the other focusing on navigating the Social Security system, led by Charo Boyd.

Q & A session

Before ending the symposium, each of the workshop presenters will come together for a question and answer session.

There will also be lots of information attendees can take home with them and free-give-aways.

“This is an opportunity, whether you’re newly diagnosed or someone who’s been living with lupus for years, to take time for themselves and become educated and empowered to live the best life possible,” said Hinkle. “This is also an eye-opening experience for those who do not have lupus.”

For more information or to register for the symposium, call Leigh Hinkle at (317) 506-5786, email leigh@lupusindiana.org or visit www.lupus.org or www.lupusindiana.org.

Living Well with Lupus Symposium

Date: Saturday, May 1

Place: Indianapolis Marriott East

7202 E. 21st St.

Indianapolis, IN 46219

Time: 8:30 a.m. – 1 p.m.

Cost: $5 for foundation members; $10 for non-foundation members; $15 for those who can’t attend but want to request materials from the symposium

For more information, call (317) 506-5786 or visit www.lupusindiana.org.

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