Lupus patients share tales of horror and hope in photo exhibit

by Symptom Advice on March 20, 2012

Johnny Wilson spent 24 years as a Navy photographer. when he retired in 2009, he started aiming his lens at people with interesting stories to tell: combat veterans, breast cancer survivors, heart transplant patients.

But the one of the young woman with the haunting eyes and bandaged, scarred belly, clutching a mass of prescription bottles, may be his crowning achievement to date.

“I thought, ‘I’ve probably just taken the most powerful photo of my life. To see her body destroyed by lupus … ,” Wilson said, his voice trailing off. “hopefully, we get the word out.”Raising awareness about lupus is the goal of a monthlong exhibit that Wilson and the nonprofit Life Without Lupus Project will unveil Monday at Penrose Cancer Center.

The exhibit consists of 14 portraits, accompanied by hand-written statements from each subject on how the  energy-zapping, organ-attacking, often-debilitating and sometimes fatal autoimmune disease has affected their lives.(Excerpts of their statements are included withthe accompanying photos.)

Amazingly, most are able to find hope and faith amid a life filled with complex medication regimens, crushing fatigue, and any number of unpleasant and painful symptoms.

“There were times in my life when I just wanted to die,” wrote 21-year-old Alyssa Robb, the woman holding more than a half dozen bottles of pills in Wilson’s photo. “But, thanks to new faith and a new outlook on life, I now know that my trials and storms are preparing me for my eternal life.”

Wilson’s idea for the exhibit grew out of his post-military mission to photograph people with gripping stories to tell.

He gives them an 11-by-14 inch sheet of archival paper and archival ink, then creates a portrait from the stories they write. so far, he has about 40 stories on a variety of subjects.

A few years ago, he met ReNai Frisco, the founder and head of Life Without Lupus, and invited her to an exhibit he had at the Air Force Academy.

“I was telling her: ‘Here’s a way to get the lupus story out to the public,’” he said.Frisco jumped at the opportunity. her sister died of lupus at age 48, leaving behind a son whose portrait will be in the Penrose exhibit.

“I don’t think people really get the impact of Lupus,” Frisco said. “Survivors call it the ‘invisible disease,’ because you can have a decent day, but that next day can be a whole different story. these folks end up on a cycle of treating the symptoms, because there’s no known cause or cure. There are endless medications, staggering co-pays and really, no resolution.”

She started the nonprofit in 2008 to help lupus patients with their rent, food, transportation and other needs. on Saturday, she’s launching a lupus support group.

Meanwhile, Wilson hopes his photo-and-story concept will lead to coffee table books on various subjects that nonprofits can use to convey their missions and raise money. He used the example of a book that might be dedicated to photos and stories of people with breast cancer. “You’ll be able to go to a website or a bookstore, read inspiration stories on survivors of breast cancer, and learn more about it,” he said. “It’s a reference to help people.”

DID YOU KNOW?• There are several types of lupus, including one that affects the skin. But the most common is systemic lupus erythematosus, which affects the joints and organs, including the heart, lungs, kidneys and brain. It accounts for about 70 percent of all cases.• 90 percent of lupus patients are women. Women of color are two to three times more likely to develop lupus.• Lupus tends to develop in people ages 18 to 45.• Lupus organizations estimate that at least 1.5 million Americans have the disease. more than 16,000 new cases are reported annually.• 20 percent of people with lupus will have a parent or sibling who already has lupus or may develop lupus.• About 5 percent of the children born to individuals with lupus will develop the illness.• an estimated 10 percent to 15 percent of people with lupus die prematurely from complications related to the disease.• two of three lupus patients lose some or all of their income because they are no longer able to work full time.• one in three lupus patients has been temporarily disabled by the disease; one in four receive disability payments.• Symptoms vary from person to person, and can ebb and flow in intensity and frequency. Common symptoms include joint pain and swelling, chest pain when taking a deep breath, fatigue, fever with no other cause, hair loss, mouth sores, a “butterfly” rash over the cheeks and bridge of the nose, headaches, swollen lymph nodes, numbness, tingling, seizures, vision problems, abdominal pain.Sources: Lupus Foundation of America; U.S. National Library of Medicine: U.S. Centers for Disease Control

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