PEMBERVILLE - The disease has taken a lot from Karen Williams. But it hasn't taken her fight.
|Karen Williams talks about scleroderma with her husband Charles at their home in Pemberville, Ohio. (Photo: Enoch Wu/Sentinel-Tribune)
Williams, Pemberville, an administrative assistant at Bowling Green State University, was diagnosed in 2006 with systemic scleroderma, and has been living with the disorder for seven years. An upcoming benefit this month will help her and her family with expenses incurred by her treatment.
"Don't give up, and if there's something wrong with you, find the answer," she said during a recent interview. "Find the answer and then you can fight whatever it is."
Scleroderma, coming from Greek words meaning "hard skin," is an incurable autoimmune disease, which numbers hardening of the skin among its manifestations, according to the Scleroderma Foundation. Symptoms vary widely in kind and severity depending on the individual and the parts of the body affected.
More than 300,000 Americans currently suffer from the disease, which is difficult to diagnose and usually onsets between the ages of 25 and 55. Female patients outnumber male patients by a ratio of four to one.
Williams' first symptoms manifested in 2005.
"I was very, very sick," she said, experiencing extreme fatigue and other issues. "It actually was a virus, is what I had, and I never recovered from that virus."
After a further illness and seeing more than six physicians to determine what was wrong, she was told that she had some form of autoimmune disorder, and Williams went to the Cleveland Clinic.
"Actually, a skin biopsy is how I was diagnosed."
Scleroderma causes Williams's body to make too much collagen, a protein found in tendons, bones and other parts of the body. As a result, her skin has hardened and darkened, and her body has stiffened, limiting mobility and even making the simple act of getting up off the couch difficult. She has lost more than 100 pounds, and said the disorder has even altered the features of her face.
"I don't look like 'me' anymore," said Williams.
Her hands have contorted into "claws," as she calls them, because of the disease and can barely open.
"I have no use of my hands to speak of," she said, and experiences constant pain in them.
"A lot of patients just end up having their fingers amputated" because of sores and other issues. She said that the essential loss of her hands is the most frustrating part of the disease - once active in various activities and playing with her two sons, Williams is unable to open doors or twist the cap off a bottle of water.
"We decided we were going to fight it and not let it get the best of us."
After spending nearly a week this spring in the intensive care unit at Mercy St. Vincent Medical Center, at St. Charles Hospital and two weeks at the Cleveland Clinic, Williams was further diagnosed with scleroderma renal crisis, meaning the disease is attacking her kidneys.
"They've shut down twice in the last three months," she said. To help, she is on a low-potassium, low-sodium diet.
"I'll do whatever it takes to make it."
The difficulty in finding a treatment for scleroderma is the simple fact that there is no dedicated medication or protocol for the disease. As a result, Williams must rely on treatments primarily used for other diseases.
"There's not enough people doing research in it to develop a cure for it."
She's undergone numerous treatments, including chemotherapy and experimental intravenous immunoglobulin infusions. She takes 14 pills every day, a trial because she also has difficulty swallowing. Williams is receiving steady care from Cleveland Clinic.
Such treatments are costly - for example, though she has insurance, the co-pay for 10 days' worth of just one of Williams's prescriptions is $200. She is currently on unpaid leave from the university.
Through it all, William's greatest support is her family, including her husband of 27 years, Chas, and their two boys.
"They had to grow up very fast," she said of her sons. "They are outstanding kids, they do laundry, they cook," and take care of other everyday chores.
"They're very protective of me when we're out in public."
"My husband is my rock," she continued. "He's been there every step of the way."
"Chas, he comes home, he fixes dinner. I wouldn't be here today if I didn't have the support of my family and friends."
"It's been a big adjustment," said Chas. "It's taken a lot of things away from us."
"I miss holding hands with her. Simple things like that."
A mechanic all of his life, Chas said he's accustomed to being able to repair what's broken.
"I can fix a lot of things," he said. "I haven't been able to fix her."
Despite the pain and the trials, the family has used humor to pull them through.
"We don't sweat the small stuff," said Chas. "We try to laugh and joke about it as much as we can."
"I think sometimes we get mad at God," said Williams, "but we've all just accepted it and it's normal."
However, she said later, "You got to be positive. That's 90 percent of the battle."
"God's not done with me yet. I've come close in the last three months and I'm still here."
To help with Williams' expenses, a chili and salad buffet and raffle is planned for May 29 at the Riverview Banquet Centre/American Legion Post 183 at 405 E. Front Street, Pemberville, from 5 to 7 p.m.
All proceeds will go to Williams and her family to help with medical bills and other living expenses.
Raffle tickets for a variety of prizes are $5 for one ticket, or $10 for five tickets.
Tickets are available at the benefit, or by mailing a check in advance made out to "Karen Williams Benefit" to: Tina Thomas, 1298 Country Road T3, Grand Rapids, OH 43522.
Those wishing to supply a salad or dessert for the event, or who wish to volunteer, can contact Thomas at (419) 308-0593.
An account for Williams and her family has been set up at the Huntington Bank and donations may be made directly to the "Karen Williams Benefit" account at any branch of the bank.