Health & Fitness

Speaking out about a silent disease

Getting a blood transfusion in 1978 changed Carol Harms’s life.

Donated blood wasn’t screened for the hepatitis C virus when Harms, then 23, needed five units of blood during surgery. That’s because the virus hadn’t even been identified or named at that time.

Blood banks didn’t start routine screening for the deadly virus that attacks the liver until 1992, three years after a scientist had identified it and given it the name hepatitis C.

It wasn’t until nearly two decades after her transfusion that Harms, who had been suffering such severe flu-like symptoms and exhaustion that it cut short her career with the FAA in Kansas City, learned that she had contracted hepatitis C through the transfusion.

Now as the Wichitan enters the end stage of her life – after two rounds of treatment have failed, and her liver has succumbed to cirrhosis or scarring – she’s doing what she can to make people aware of the prevalence of the virus and treatment options and provide support for those who have the condition.

“After I was diagnosed with cirrhosis (in July 2010), I knew I’d be dying, so I decided with the rest of my time I want to speak up and help people who have it and educate others,” said the 58-year-old Harms, who leads a monthly hepatitis C support group in Wichita. “I feel God has a purpose for everyone, and if I’m still here, I have a purpose.”

Harms isn’t alone in her concern that many people have the virus and don’t even know it.

Last year, the Centers for Disease Control and Prevention issued a sweeping recommendation that anyone born between 1945 and 1965 be tested for the virus.

The CDC said baby boomers born during those two decades are five times more likely to have the virus, although it’s not completely understood why. About 75 percent of the estimated 3.2 million U.S. carriers of the virus are boomers, the CDC said – it estimates that 1 in 30 baby boomers is infected. As many as 15,000 Americans die each year of cirrhosis, liver cancer or other diseases related to hepatitis C.

“It’s known as a silent killer because some people don’t develop symptoms until it’s too late to treat,” said Raghu Chaparala, a gastroenterologist with Midwest Gastroenterology Clinics in Wichita.

Symptoms include fever, fatigue, nausea, abdominal pain, joint pain, vomiting and jaundice. But as many as 80 percent of those carrying the contagious virus don’t show symptoms, the CDC said.

Before making the broad testing recommendation for boomers, the CDC used to recommend testing only for people with known risk factors. One of those is past or current use of injection drugs and the sharing of needles. Some people were going undiagnosed because they didn’t want to talk about such behavior.

But the fact is that there are other risk factors, noted Harms, citing her own situation.

The most common way to contract the disease is through blood-to-blood contact, whether through an open wound, blood transfusions before 1992, or even the sharing of personal hygiene products such as a toothbrush or razor that could come in contact with infected blood, Chaparala said.

Health-care and other safety workers can be at risk if they suffer a needle-poke injury. A less-common risk is sexual promiscuity, said Chaparala, who has been treating people with hepatitis C since 1996.

It’s become important to Harms to help educate people about how the virus is spread, especially since she went through a painful experience of having a family member misunderstand her illness.

She still tears up as she recalls an incident shortly after she told her family about her diagnosis. She was trying to give some ice chips to her mother who was undergoing cancer treatment when her elderly grandmother took the cup of ice and dumped it, “just because I’d touched the ice,” Harms said.

When she reveals her disease to people, she usually says, “Don’t worry, you won’t get it from me, because I don’t plan to bleed on you.”

There is no vaccine to prevent hepatitis C, as there is for hepatitis A and B.

As with many illnesses, getting an early diagnosis of hepatitis C virus is important, because treatment can put it in remission. Success rates vary among the six genotypes of hepatitis C, Chaparala said.

Even though Harms’ diagnosis came years after she contracted the virus, she did undergo the treatment, which generally involves taking the antiviral drugs interferon and ribavirin. Some people may be eligible for a liver transplant.

The drug treatment usually lasts a year and is grueling. After each of her weekly interferon shots, Harms was put on bed rest for two to three days. She also was treated with another class of medications for the virus in recent years. None of the drugs worked for her.

But working with a local support group of hepatitis C sufferers has helped Harms deal with her illness and provide help to others. She took over the group about two years ago, and as many as 20 people currently attend.

“A doctor will tell you medical things, but when you go to a support group, they tell you the other things, like living with it,” Harms said.

The group, in which members may remain anonymous, meets the third Thursday of every month, from 6 to 8 p.m., at Immanuel Baptist Church, 1415 S. Topeka.