Mom, daughter won’t let hepatitis C define them

StephenW

http://www.journalgazette.net/article/20121125/LOCAL/311259931/1002/LOCAL

Hip on  Hep C
When: Third Friday of every month, 6 p.m.
Where: DeKalb Health, third-floor conference Room, 1314 E. Seventh St., Auburn
Info: For more, call Christie Soaper at 260-927-8180


Hepatitis C
Who should be tested?
New, expanded recommendation from the CDC:
•All persons born from 1945 through 1965
Existing, risk-based guidelines:
•Anyone who has ever injected illegal drugs
•Recipients of blood transfusions or solid organ transplants before July 1992, or clotting factor concentrates made before 1987
•Patients who have ever received long-term hemodialysis treatment
Persons with known exposures to hepatitis C, such as:
•Health care workers after needle sticks involving blood from a patient with hepatitis C
•Recipients of blood or organs from a donor who later tested positive for hepatitis C
•People living with HIV
•People with signs or symptoms of liver disease (abnormal liver enzyme tests)
•Children born to mothers who have hepatitis C
Source: U.S. Centers for Disease Control and Prevention


Cathie Rowand | The Journal Gazette
Christie Soaper and daughter Logan, 14, pose with a quilt meant to raise awareness of hepatitis C, a disease both of them have.

Published: November 25, 2012 3:00 a.m.
Mom, daughter won’t let hepatitis C define them
Vivian Sade | The Journal Gazette

Logan Soaper of Auburn has hepatitis C.
While she wants people to be open and ask about the disease, she does not want to be defined by it.
It’s nothing to be afraid of, she said.
She really wishes people would ask her what her hobby is – drawing – or what she would like to do – be a cheerleader – or who her favorite singer is – Carrie Underwood.
Logan, who looks younger than her 14 years and has luminous dark eyes, contracted the disease when her mother, Christie Soaper, gave birth to her in 1998.
They are among the 3.2 million people in the United States estimated to be infected with hepatitis C. The U.S. Centers for Disease Control and Prevention also estimates that 75 percent of the millions infected are baby boomers – those born between 1946 and 1964, according to CDC spokeswoman Salina Cranor.
There are five strains of hepatitis. There is a vaccine for hepatitis B, but there is not for hepatitis C.
Hepatitis can be spread through blood products or organ transplants, tattoos, body piercings or sexual activity. Today, the most common way the virus is spread is through drug use and sharing needles.
While the number of diagnosed hepatitis C cases continues to climb, of greater concern to health officials is the number of Americans who have the virus but don’t know it. In Allen County, it’s estimated that almost 3,000 people could be infected with hepatitis C.
The CDC estimates that a one-time national testing of baby boomers could identify more than 800,000 additional people with hepatitis C.
The number of Americans dying from hepatitis C-related diseases was 15,768 in 2008, up from 15,000 in 2007, Cranor said.
For the first time, the CDC is promoting a national screening and awareness day in May to encourage baby boomers to be tested by their family physician, Cranor said.
Those who test positive will be referred to care and treatment and a brief screening.
Since the disease has few symptoms, many do not discover they are infected until it is too late – the disease has already progressed to liver disease, liver cancer or resulted in the need for a liver transplant.

Blood to blood

Two of Christie Soaper’s five children – Logan and Lacie – still live at home. Two sons are grown and living on their own and a third son died of sudden infant death syndrome in 1984.
Christie, 50, contracted hepatitis C through a blood transfusion after her second son’s birth.
When Logan was born in 1998, there were complications. Doctors tried to remove Logan with forceps and accidentally cut her, allowing her blood to mingle with her mother’s and for the virus to enter the infant’s body.
It would be two more years before Christie discovered she had hepatitis C, and three more years before she found out her daughter also had the disease.
Christie’s blood transfusion was five years before the country’s mandated screening of blood donations in 1992.

Debilitated

For two years after the birth of her daughter, Christie repeatedly felt as if she had the flu. She kept working at her job at Cooper Tire & Rubber Co. in Auburn, but the fatigue was debilitating. Test after test showed nothing. Finally a doctor ordered a hepatitis C test, which is not normally requested.
It was positive.
Christie did not know what hepatitis C was.
“When the doctor explained, it was a tearful moment,” she said.
Christie had a lot of questions and decided to research the disease on her own.
At that time, in 1999 in DeKalb County, “There was no awareness, no pamphlets, nothing,” she said.
The worst thing was what Christie calls the “cootie factor.”
“There is definitely a stigma with this disease,” she said. “There are a lot of people who have been diagnosed, but they will not admit to it, which is sad. They could get treatment.”

Hip on Hep C

A year after her diagnosis, Christie decided to have all of her children tested for the disease. All tested negative, except Logan.
Christie, who had been unable to find a support organization, decided after hearing her daughter’s diagnosis to start her own group.
She started Hip on Hep C, a nonprofit organization that meets monthly at DeKalb Memorial Hospital and will celebrate its eight-year anniversary in 2013.
Now, the Hip on Hep C group averages about 20 to 25 people a meeting and the stories are heartbreaking. At least 10 members of the group have died since it began, Christie said.
Two brothers who attended the support group suffered from hemophilia, a hereditary blood-coagulation disorder, and had contracted hepatitis C through blood transfusions. A third brother had died from the disease.
Today, only one of the three survives, Christie said.

No guarantees

After undergoing treatments, the virus is no longer detected in Christie and her daughter’s blood, which they term as a remission of sorts.
“We still have the symptoms and can’t give blood, so we’re not free of the disease,” Christie said.
Logan went through the painful and costly treatment – which can include liver biopsies and strong medications with harsh side effects – when she was a first-grader, with promising results. Her mother has received treatment twice.
“The treatment is very expensive,” Christie said. “Up to $10,000 a month, and there’s no guarantee that it will work.”
The first time she underwent treatment, her weight plummeted from 168 to 98 pounds and she lost most of her hair.
“The medicine and treatment they give you is similar to chemotherapy,” she said.
Christie was forced to quit her job. She applied for and received Social Security disability and also qualifies for Medicaid.
She suffered a stroke this year, and the effects of that, along with the blood disease, leave her incapacitated much of the time.
“About 300 days of the year,” she said, “I’m sick in bed.”

Growing up fast

Daughter Lacie, 17, has become the nurse, mother, cook and housekeeper. Her mother regularly takes several medications and must have injections to treat the disease and to quell nausea. And, she is rushed to the hospital almost every month with some sort of emergency health situation.
Lacie once received a 911 Emergency Response Award from local EMS crews for assisting her mother.
Being sick affects every aspect of life.
The single mom finds it hard to reach out and start a relationship.
“Who wants to get involved with a sick person?” she said.
Christie said it’s the first thing she includes in an introduction.
“I say, ‘Hi, my name is Christie and I have hepatitis C.’ I don’t want to hide it,” she said.
Depression is common with the disease.
Logan’s friends, teachers, administrators and members of their church have been supportive and perceptive to Logan’s moods and her needs, Christie said.

Defining the future

“Mom thinks I can’t, but I want to be in cheerleading,” Logan said, giving her mom a sidelong glance. “I have a friend who likes to run and she has asthma. I just have to strengthen up and do it.”
“Sometimes she is so tired she just has to sit down,” her mother explains.
“I can do it. I don’t want to just sit here and do nothing. I want to go out in the world and see what is going on,” Logan said, and then quickly added, “no offense.”
Christie shrugged and smiled. “None taken,” she said.
Logan wants to become a pediatric hepatologist, a doctor who specializes in disorders of the liver in children.
But before she does that, she has other plans.
She hopes to start her own support group for other children who also suffer from life-altering diseases.
“Kids with asthma, diabetes, hepatitis C … just because we have a disease doesn’t mean we are not equal to others. We like to do the same things everyone else does,” Logan said.

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