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July 15, 2014

Local mom seeks to educate about lupus

TIFTON — A local mother is hoping to raise awareness about lupus while also aspiring to start a support group with help from some friends.

Cashonda Burns said her two daughters, Ashley Brantley, 21, and Chasidy Brantley, 20, both have lupus. She said they were diagnosed with the disease when they were each 16 years old.

"They deal with it. They're strong," she said.

According to the Lupus Foundation of America, lupus is a chronic autoimmune disease that can damage any part of the body (skin, joints and/or organs inside the body). In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria and germs ("foreign invaders," like the flu). Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better).

Their research estimates that at least 1.5 million Americans have lupus. They say the actual number may be higher; however, there have been no large-scale studies to show the actual number of people in the United States living with lupus. More than 16,000 new cases of lupus are reported annually across the country. It is believed that 5 million people throughout the world have a form of lupus.

According to the National Institute of Arthritis and Musculoskeletal and Skin Diseases, anyone can get lupus, but it most often affects women. Lupus is also more common in black women, as well as Hispanic, Asian and Native Americans.

"People really don't know about it and what it does to your body," Burns said. "We wanted to really get our own organization (started) up."

One of Burn's supporters, Angela Anderson, says she also has lupus. Now age 42, Anderson said she was diagnosed with lupus when she was 28 years old. They said they came together as friends and are working to build awareness about lupus. Others on Burns' support team include her aunt, Linda Rogers, as well as Catherine Joiner, Lisa Howard, Sheila Wright and Terry Hurley.

Burns said her daughters are not on Medicaid or Medicare. She lost her job due to her sitting with Ashley for three months while she's been in the hospital at Emory in Atlanta. She also lost her house, and with her traveling  back and forth to Atlanta, her car broke down.

"I felt like my life had to be revolved around my child. I can't replace a child, but I know I can replace that job," she said.

Although Burns gets help from some family and friends, it's been hard. This has inspired her and Anderson to help other families who may be in a similar situation and need support.

Anderson commented, "What people don't understand is that disability is a hard thing to get for a person with lupus."

"We're trying to start this organization to fund if you don't have money for medicine or you need equipment," Burns said, noting Ashley will soon be released from the hospital and will need equipment, for which she doesn't have the money. "It's to support the parent and child, too."

Anderson said she and some other women involved in starting the support group are going to take a class in August in Atlanta. Following that, they will proceed with plans of starting a group to which those with lupus can come to and share their stories.

"A lot of people don't even know what lupus is, let alone the things that it can do," Anderson said. "It can go from mild to life threatening."

She said she tells people she's still able to work, but she can't work at the level that they expect her to. She said she has her good and bad days. She said that one day she feels so good she could run a marathon, but the next day, she may not be able to get out of bed.

Burns showed photos of Ashley's condition, commenting, "She's been through something I feel like I probably wouldn't or couldn't."

She said Ashley went from weighing 125 pounds to about 300-400 pounds due to fluid retention. While at Emory, her kidneys shut down and she coded three times. She had to go through therapy to learn how to walk again.

"We want to get the support group started and raise funds. We want to be able to have those funds so when you have somebody in the situation like Cashonda and her daughters, we can help them," Anderson said.

"We're trying to start an organization to help each other," Burns added. She and Anderson said they want to include everyone.

"[We're] trying to let people know not only does it affect the person with lupus, but their family as well," Anderson said. "It affects everyday life."

"I don't have it, but it's hell just looking at somebody go through it," Burns said.

She said her daughter, Chasidy, also has her ups and downs. She's been hospitalized before in ICU. While in Florida at the beach, she passed and had to be taken to the hospital. She stayed there for about four months.

"The hardest task is looking at your child going through all of this and there's nothing you can do," Anderson said. She added she's been through problems but nothing as severe as what Burns' daughters have been through.

"It varies from person to person how lupus affects people, she said. "No two people with lupus are alike."

Burns, who's currently staying with a friend, said Ashley is doing better and will soon be returning home to Tifton. She noted she has two other daughters and so far, they have not been diagnosed with lupus, nor has any paternal family member. Anderson noted her mother died from complications of lupus 18 years ago.

"Back then they didn't know a whole lot about it," she said.

Local group Pearls of Wisdom and Hurley are sponsoring a fish fry for Ashley starting at 8 a.m. Saturday at Thomas Car Wash on South Central Avenue. People are welcome to stop by to make any donations to help the family. You may also call 848-5745 to make donations.

To contact reporter Latasha Ford, call 382-4321.

 

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