Coping with Hepatitis C When You Have a Bleeding Disorder

Self-infusion sounds innocuous enough until you consider the reality: using a hypodermic syringe to inject clotting factor concentrates directly into your bloodstream.

For people living with hemophilia, mastering the skill is a major milestone on the path to independent living, one of many challenges that come with managing a disease in which blood doesn’t clot correctly.

Those challenges can be daunting on their own.

Read More: 5 Tips for Infusing Away From Home

But many people living with hemophilia today are also dealing with complications from another disease: hepatitis C, an often-chronic infection that if left untreated can lead to cirrhosis and liver cancer.

There’s no biological reason the two should occur together. The fact that they do is a result of standard treatment practices for hemophilia before testing for hepatitis C began in the late 20th century and procedures were developed to inactivate it in blood products     .

It was only earlier in the same century, in fact, that researchers had discovered that hepatitis was caused by viruses, eventually separating them into distinctive types including A and B.

The existence of hepatitis C wasn’t even theorized before the mid-1970s, and it wasn’t identified until 1989, so blood and blood products used by people with hemophilia at the time could be tainted without anyone’s knowledge.

As a result, studies have shown that as many as 90% of people treated for hemophilia before 1992 contracted HCV, the virus that causes hepatitis C, according to the U.S. Centers for Disease Control and Prevention. There have been no reports of HCV transmission through factor products since.

Hepatitis C Infection

The virus, transmitted primarily through exposure to infected blood, initially causes a silent infection in most patients, with only 20% to 30% showing symptoms that include:

• Fever
• Fatigue
• Loss of appetite
• Nausea
• Vomiting
• Abdominal pain
• Dark urine
• Clay-colored bowel movements
• Joint pain
• Jaundice (yellowing in the skin or eyes)

A small number of people infected with HCV, about 25% or less, are able to clear it from their bodies during the acute stage — which occurs within six months of exposure — without treatment.

Most are not, however, and because acute infection so often occurs without symptoms, they rarely seek diagnosis or treatment that could reduce the risk of a long-term, or chronic, infection.

The noticeable effects vary widely. Because liver disease progresses slowly, some people with chronic hepatitis C display few or no symptoms for decades.

The disease may progress more rapidly, however, in patients who are older, drink alcohol, or have overlapping infections with other viruses, including HIV.

Getting Tested for Hepatitis C

You should talk to your doctor about hepatitis C testing if any of the following apply to you, the CDC says:

• You were born from 1945 through 1965.
• You’ve taken drugs by injection, even if you did so only once or many years ago.
• You were treated for a blood-clotting problem before 1987.
• You received a blood transfusion or organ transplant before July 1992.
• You’re on long-term hemodialysis treatment.
• You have abnormal liver tests or liver disease.
• You work in healthcare or public safety and were exposed to blood through a needlestick or other injury with a sharp object.
• You’re infected with HIV.

Dive Deeper: Here’s How To Go About Hepatitis C Testing and Evaluations

How Hepatitis C Affects People with Hemophilia

As with any chronic illness, the more variables that exist, the more complicated managing it becomes.

For starters, research has shown that just 10% of people with hemophilia and other bleeding disorders who contract hepatitis C are able to clear it from their bodies on their own, a significantly lower rate than that of the general population.

And a 2008 study of people with both hemophilia and HCV found that about 25% developed liver fibrosis, a buildup of scar tissue in the liver that blocks blood flow and starves healthy cells, after a median 40 years.

But the outlook is improving. While earlier, interferon-based treatments for hepatitis C proved effective only about half the time, newer direct-acting antiviral (DAA) medicines cure over 90% of patients with few side effects, according to the CDC.

The treatments, which usually involve two to three months of pills, have proven as effective for people with hemophilia as for those without the disease, according to studies.

Hepatitis C Self-Care

While the CDC recommends universal treatment with direct-acting antivirals for hepatitis C patients, the agency says few people receive it within a year of diagnosis.

Getting treated early is essential to preventing cancer and severe liver disease as well as reducing transmission, the agency adds. More than 2 million adults in the U.S. have the disease, and infections are rising.

The CDC also advises people living with chronic hepatitis C — and those for whom the disease has led to cirrhosis, advanced and extensive scarring of the liver that can keep it from working correctly — to arrange regular monitoring by a doctor to identify and treat possible complications including liver cancer.

Other recommendations include:

• Obtaining vaccinations for hepatitis A and hepatitis B.
• Avoiding alcohol, which can further damage the liver.
• Checking with your doctor before taking any prescription pills, herbs, supplements, and over-the-counter medications because they can potentially damage the liver.
• Getting tested for HIV, since people who have both HIV and HCV are more likely to develop cirrhosis.
• Getting a flu shot every year.
• Avoiding raw oysters, since they may carry a germ that can cause a fatal blood infection in people with liver disease.
• Eating a healthy diet with lots of fruits and vegetables.
• Avoiding strong chemicals such as weed killers and paint thinners, since inhalation and absorption through the skin may cause liver damage.
• Getting plenty of sleep.
• Exercising regularly.