Walk aims to raise funds for lupus programs
by Michelle Babcock
April 06, 2014 04:00 AM | 4242 views | 1 1 comments | 23 23 recommendations | email to a friend | print
More than 55,000 in Georgia alone suffer from lupus, an autoimmune disease with few visible symptoms. Above: From left, lupus patients Michelle Hobbs, Karon Beasley, Pam Bennett and Stacie Collett stand together to show the many faces of people impacted by the disease. <br>Special to the Tribune
More than 55,000 in Georgia alone suffer from lupus, an autoimmune disease with few visible symptoms. Above: From left, lupus patients Michelle Hobbs, Karon Beasley, Pam Bennett and Stacie Collett stand together to show the many faces of people impacted by the disease.
Special to the Tribune
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After four years and six doctors, Woodstock resident Karon Beasley was finally diagnosed with lupus in 1998 — but lasting damage had already been done to many of her internal organs.

Beasley said her story is far too common, as more than half of people with lupus visit multiple doctors before being diagnosed with the autoimmune disease.

“It’s very common with patients — they see four to six doctors before getting a diagnosis,” Beasley said. “I started getting fatigue in 1994, and it was December of 1998 before I got a diagnosis.”

More than 55,000 Georgians have been diagnosed with lupus, many in Cherokee County, and the Walk to End Lupus Now is aimed at raising money for research and education programs about the disease.

This year’s Walk to End Lupus Now is planned for April 26 at Piedmont Park in Atlanta, and Beasley said the Lupus Foundation is hoping to raise even more money and awareness than in previous years.

The first walk to end lupus was in 2007, and Beasley was the very first walker to sign up for the fundraiser.

“We didn’t know in that first year if anyone would show up,” she said. “They did, and I remember being so emotional, seeing a sea of people walking around Piedmont Park.”

About 700 people ended up participating in the inaugural year of the event, which attracted more than 8,000 people in 2013 and raised $500,000.

In the four years before Beasley was correctly diagnosed, doctors told her she had everything from thyroid disease to PMS, as she continued to suffer without the correct medication.

“They were just stabbing in the dark,” she said. “Nothing worked, and everything came back normal. So I thought, ‘Maybe I have an allergy, and it’s something that’s making me very tired and causing the rash.’”

Beasley said her headaches, fever and other symptoms worsened as she went on without a lupus diagnosis for four years.

“I went to see Dr. Roberson up in Woodstock, at Atlanta Allergy. She saw the rash, and she said ‘Honey, that’s not allergies,’” Beasley said. “She was the only doctor that did an autoimmune panel.”

Beasley was diagnosed with lupus and Sjogren’s syndrome, which is also an autoimmune disease, known as a cousin of lupus.

“I was a fit person. I always exercised. I took vitamins and had a healthy diet,” she said. “But in my 20s, to be that tired … I couldn’t tolerate the sun anymore; it would just wipe me out.”

Beasley said people are constantly suffering from misdiagnosis of lupus and urged others to advocate for themselves.

“I have organ damage that cannot be undone because I was not diagnosed in time,” she said. “The patients usually do not look sick at all — you don’t see the disease.”

Sunlight sensitivity, rashes, hives, swelling, hair loss, joint pain, extreme fatigue, chest pains, difficulty breathing, headaches, low-grade fever, bad circulation in fingers and toes, mouth or nose ulcers, among other symptoms, can be signs of lupus, Beasley said.

“I had most of the criteria. I was like the poster child for lupus by the time I was diagnosed,” she said. But not everyone shows all of the signs, she said.

There is no cure for lupus, and Beasley said there’s still a long way to go before treatments are perfected. Beasley said the cause of lupus is still unknown, but she’s hopeful that research will yield answers in the near future.

“My mom suspects I had this as a child; she could never get me well,” Beasley said. “From what I’ve seen, it points toward genetics. It seems to run in families.”

Lupus wreaks havoc on the body and mind, Beasley explained, impacting people’s memory causing what’s called “the lupus fog,” she said.

“You can’t think clearly,” she said. “It causes some really serious stuff.”

When Beasley was diagnosed, she said it was rare to for the disease to be discussed. “You never saw it mentioned,” she said.

“Awareness has come a long way, but there’s still a long way to go,” she said.

Beasley explained there are only two approved medications for lupus, and many patients use anti-cancer drugs to combat the disease.

“They use those to try and suppress the immune system, but they’re off-label,” she said. “So, people are sick from the treatment and aren’t really getting anywhere. I hardly ever hear of anyone in remission — and that means ‘without symptoms’ — The lupus won’t go away, it just means there’s no disease activity.”

Beasley said the medications are used to try to slow down the disease process, but the side effects are immense.

“Managing this disease is a full-time job,” she said.

It’s now been 12 years since Beasley was diagnosed with lupus, and she said not only does the disease cause physical harm, but also takes a toll on her finances, self-esteem and friendships.

“Socially, it’s hard to keep plans when you have lupus, because, you may feel OK in the morning, but then you’ll be wiped out by noon,” she said. “It’s hard to keep social plans, so you lose a lot of friends.”

With severe pain and fatigue, Beasley said going out for social events has become nearly impossible.

“It affects your self-esteem when you see your friends out having a good time. And it gets hard when you’re just sitting here and the days start to bleed into one another,” she said. “Some days, I can’t even get out of bed.”

Along with the social impact of lupus, Beasley said the cost of going to dozens of specialists each year is extraordinary.

Without the ability to work, Beasley said the disease causes a big financial hardship on her parents, who live in Canton.

But Beasley said she’s been able to find strength and purpose in the fight to raise awareness of lupus.

Beginning her journey of advocacy as the first walker to sign up for the inaugural statewide lupus walk, Beasley said the Georgia lupus walk is now the largest in the nation.

“It’s unbelievable,” she said. “My parents were a part of the process of getting the chapter started.”

Beasley said the Georgia chapter of the Lupus Foundation now has a firm foundation, with dozens of support groups throughout the state.

“It’s been a thrill to be a part of something like that,” she said.

The Cherokee County lupus support group meets the second Thursday of each month at New Light Baptist Church off Univeter Road in Holly Springs, Beasley said.

The church is at 1716 New Light Road, and more information on various support groups can be found at lupus.org/Georgia.

The 2014 Walk to End Lupus Now is scheduled for April 26, with events beginning at 1 p.m. and the 1-mile walk on flat terrain set for 5 p.m.

The walk is free, and the event will feature food vendors, face painting, a DJ and other attractions.

“It’s a fun day,” she said.

Everyone is encouraged to participate, and Beasley said walkers can even sign up to walk “virtually” if they can’t be walk in person.

Individuals or teams can register for the walk, and people can tell their story on a personalized fundraiser page through LupusWalkAtlanta.com.

On Friday, Beasley had raised $830 of her $4,000 goal. Donations can be made to her fundraising campaign by visiting LupusWalkAtlanta.com and searching for “Karon Beasley” under the “Donate to a walker’s campaign” page.

Beasley said 90 percent of the funds raised will remain in Georgia to help local people, and 10 percent goes to the national foundation for research and awareness.

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Karon Beasley
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April 06, 2014
Correction: Diagnosed 15 years now, after 52 years Benlysta has been FDA Approved - but not for all due to disease specifics and cost. Great article. Hope people that need support or want to walk are encouraged and will join us!

Karon
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