Walk for Lupus Now is Sunday, May 15

Written by Ann Richardson Monday, 09 May 2011 11:52

Some days, Peggy Miller’s knees hurt so badly she wonders how she will climb the steps in her Ocean City home.

Miller was diagnosed years ago with lupus, and struggles with painful joints and other debilitating symptoms. She hopes to see a large crowd on the Ocean City Boardwalk on Sunday, May 15 for the third annual “Walk for Lupus Now” event. Sponsored by the Southern New Jersey chapter of the Lupus Foundation of America, the organization’s signature event features a 2K or 4K walk. 

“You can take a nice walk on the Boardwalk, help raise money and spend the day in Ocean City,” said Miller. “Last year we raised $28,000, and already the number of people entered has doubled, so we’re optimistic. The goal this year is to raise $35,000.”

There’s hope on the horizon for Miller and others with lupus. Awareness and education are important, but for those suffering, it’s all about “movement.”  In March, the FDA announced its support for Benlysta, the first treatment approved for lupus in more than 52 years.

“It’s the first drug ever approved that is specifically for lupus, not something that was approved for something else that, oh by the way, might help with lupus,” said Miller. “So it’s very exciting. It’s not a cure, but the approval of Benlysta is a first step towards achieving the goal of developing safe, effective and tolerable treatments.”

More than 1.5 million people suffer from lupus; 45,000 of them live in New Jersey. The condition is notoriously difficult to diagnose.

“It took years for doctors to figure out what was wrong with me,” she said. She suffered from a host of symptoms, including skin rashes, vertigo, joint pain and swelling. When she went grocery shopping, the fluorescent lighting hurt her eyes.

Worst of all, Miller, then a school teacher, was chronically fatigued; she could barely make it through the school day. Because she didn’t always look sick, Miller said people questioned what was wrong.

“People would tell me I looked great, but I felt horrible,” she said. “Lupus, she said, is often referred to as an “invisible” illness because the symptoms are debilitating but not readily apparent.

With the proper medication, most of Miller’s symptoms have subsided, but because lupus is chronic, she will never be free of it. Lupus is an acute and chronic autoimmune disease in which the immune system is unbalanced, causing inflammation and tissue damage to virtually every organ system in the body. It most commonly attacks the skin, joints, the heart, lungs, blood, kidneys and brain.

For some patients who are mildly afflicted, lupus can be managed as a chronic illness, but the disease can be quite serious and even life-threatening. There is no cure, though symptoms can be treated with drugs such as corticosteroids and immune-suppressants. The disease does not follow a common path. Lupus patients often suffer unpredictable bouts of the disease, called flares, followed by periods of remission.

Miller says she is thrilled that Benlysta is there should she need it. But the research community and lupus sufferers cannot rest on their laurels.

“We’re pushing for more funding, testing and research,” said Miller. “We have a viable new drug beyond the steroids and anti-inflammatory drugs, but we can’t stop. There’s still not much out there for middle-of-the-road people who don’t have kidney involvement.

“Funding could also be used for support groups and educational workshops,” she said. “A lot of people have lupus and they don’t even know it. The symptoms affect everyone differently, and you can have symptoms long before they can accurately diagnose lupus. Some symptoms affect the central nervous system, some don’t.”

Life with lupus has been difficult. Miller lives near the beach yet has to watch her sun exposure. She longs to ride her bike and walk; some days she just can’t.

“My son was five years old when I was diagnosed,” said Miller. “I would go to school, teach a half day and have to come home and take a nap before he came home. I would tend to him, fix dinner and go to bed. It was all I could do to work a half day. I was exhausted all the time. There were days where I just wanted to go into the storage closet and sleep all day. It was so frustrating.

“I couldn’t go to my son’s soccer games, I couldn’t be out in the sun, it made me sick,” she said. “I felt so guilty. I thought, ‘What kind of mother am I?’ The fatigue wipes you out. It was an awful time. Once I was diagnosed, I could handle things a lot better.”

The Tri State Chapter of the Lupus Foundation of America is hoping to raise $25,000 and awareness.

“My hope is that someone will read this, or see the walk and read about Lupus and think about their symptoms and say ‘Could I have lupus?’” she said. “It’s awful to be sick, out there all by yourself and suffering until you get to the right doctor who can put these symptoms together.”

Miller said she has a much better attitude about her diagnosis. “I joined a support group,” she said. “Whenever you meet new people you have an opportunity to learn new things.”

Miller copes with the disease as best she can.

“I buy number 70 sunscreen and I sit in the shade, under an umbrella on the beach,” she said. “I have found ways to get through and make the best of it.

“I buy hats for the beach, and my theory is, make the best of it. You figure, if you have to wear a hat you might as well have one in every color.”

Miller and her husband Dave live in the city’s north end. She works at Boardwalk Embroidery in the firm’s All Campus Sports Store.

Miller is hoping the annual “Walk for Lupus Now” event will shine a spotlight on the disease and the need for a cure.

There will be events in 50 cities across America on Sunday, May 15. The local event begins and ends at the Ocean City Music Pier. Registration begins at 9 a.m. and the walk officially kicks off at 10 a.m.

For more information about lupus, visit the Lupus Foundation of America website at www.lupus.org.