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Sondra Atkins won't let disease get the best of her
By Patti Pfeiffer, Special contributor
From the outside, the small garage-converted apartment located on a relatively remote wooded area in west Denton County seems like a tranquil retreat. Yet, judging from what goes on inside, it is more accurately described as a torture chamber.
Once a day, every single day, Sondra Atkins emerges herself in a vinegar-laced bath in order to prevent infection from taking aim at her wound-ravaged body. Born with a rare skin disorder, 75 percent of Sondra's body is covered in open sores, the severity equivalent to third-degree burns.
Her affliction is unknown to most. A genetic disorder, Epidermolysis Bullosa (EB) leads to disability, disfigurement and death. EB renders skin so fragile that the slightest pressure can cause blistering and open wounds, externally and internally. Many born with EB do not survive infancy. There's no cure or treatment.
Making it even worse, Sondra suffers with the most severe and rarest among the rare forms. Sondra's body serves as visible evidence of the horrendous disease: her face, nose, ears, neck and back are covered in dark crimson scabs, open wounds that ooze.
"I see myself in the mirror and wonder how people can stand to look at me," she reluctantly admits.
But that hasn't always been the case. An outgoing Denton High School student, few classmates realized Sondra's physical plight. Wanting to fit in, be part of and live a normal life, Sondra says she became a master at masquerading. She remembers vividly going to great lengths to keep her affliction a secret, using bandages and clothing to hide sores.
Pain has always been her constant companion. Since birth, Sondra's survival has hinged on a brutally agonizing routine she willingly endures. Her earliest memories are anything but typical childhood recollections.
"Every morning after the big kids left for school, mom would painstakingly help unstick the fabric of my nightgown one wound at a time until I was free," Sondra said. "Then it was a bath with Betadine. Even today I clearly remember the green lettering on those bottles that sat there beside the tub. It would burn so much. Later it was salt that became the agent of pain. Before and after school every day. As an adult I've 'graduated' to bleach and then to vinegar."
In addition to the stinging soakings, there's the daily wound care which takes three hours. "I can't sustain life without bandaging every day. I choose to go through the pain aspect in order to live. I push through the pain, remember it's only temporary and it is what keeps me alive."
Late last year Sondra spent seven weeks in a hospital fighting infection and for survival. She pushes back her loose fitting clothing to reveal a tear wound caused by a nurse who ripped a bandage off her delicate skin causing an open wound which eventually crusted over and turned into what is classified as a dry wound. "It's my battle scar," she says.
Life has not always been so challenging. Sondra had a career, married and did what doctors warned her could not be done. She had a baby. "They told me my body would not support a child for several reasons: all nutrients are used by my body to fight infection and could not nourish a developing fetus, that physically my frame was not strong or large enough and finally that my skin could not and would not expand with the pregnancy," Sondra explains with a defiant kind of smirk. "But I did. I had my baby girl. Though there was a 75 percent chance my baby would have EB and while she might be a carrier she was spared the disorder."
Sondra's daughter, Jessie, graduated a few months ago from Argyle High School. Wanting to see her daughter cross the stage kept Sondra pushing on. "Jessie is my driving force, the reason I get up every day. She's my world."
Brett Kopeland of New York knows EB, too. Four years ago his daughter was born with EB. She has since lost the use of her hands and is not expected to live to age six. Experiencing EB caused this father to give up a lucrative corporate position to become executive director of Debra.org, the only non-profit organization dedicated to EB research, awareness, services and programs.
Though an EB expert of sorts, Mr. Kopeland was completely shocked to learn of Sondra. "It's definitely an anomaly. Over 87 percent of those with her type of EB die within the first year," Mr. Kopeland says. "I've never heard of anyone reaching her age. To have the strength to live that long is remarkable."
No doubt Sondra is remarkable. Though her life is a living hell, she rarely complains. Bandages and medical supplies can top $10,000 per month. Her case is so rare battling the red tape is a constant fight. Her apartment is not wheelchair accessible, rendering her sink useless. Her back is caked in sores, making sleep a chore. There's a blister lesion on her cornea, which when it breaks causes hot fluids to drain down her cheek. Outings are rare. Isolation is common.
"I'm a people person, a touchy feely kind who likes hugs and touches so not getting out and not being around others is one of the worst aspects of having EB," Sondra said. "But my faith is strong. I never felt 'why' is the right question to ask. Granted my challenges are a little different than most people but I don't think it's fair to say they are any worse than anyone else's."
That attitude in itself is another reason why Sondra is an anomaly and truly remarkable.
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it.
How can I help Sondra? Is there an
EB Foundation? May I help on a personal level...ie send cards and/or help with personal needs. I will check with Debra.org. Thanks for printing this truly remarkable story. "