Ask Emaliss: Informing The World About Hepatitis C
"In 1981 I was transfused with two units of blood after an emergency C-section. Within a few months I came down with hepatitis B. I recovered and went on with my life. In 1987 I began feeling tired but tried to ignore it. Then, in 1989, after two years of tiredness turned into total exhaustion and I became so ill I had to quit working outside of my home, I was literally homebound. That's when I was diagnosed with hepatitis C. But since very little was known about this disease which affected me so severely in ways doctors couldn't recognize, and I had a family to raise, I decided that if they couldn't figure out what was wrong, then I'd better figure it out myself."That's how Elizabeth Webb begins her bio on "Ask Emaliss", her online magazine (soli.inav.net/~webbsite) that debuted on the World Wide Web on May 20.Webb is a passionate advocate and activist whose quest is to help the world recognize and understand chronic hepatitis C, the profoundly debilitating illness that forces her to pursue her quest from inside her home in Coralville, Iowa.It's possible that you have never heard of hepatitis C. While at least 3.5 million Americans are known to be infected by the virus, relatively few people -- including medical professionals -- know much, if anything, about it. Because hepatitis C has only recently been identified and because it does not act like other forms of hepatitis, people living with the disease must cope not only with its effects but also with a medical profession that has little information about it and sometimes refuses to recognize it.That's why Webb created "Ask Emaliss": to provide a forum for people affected by chronic hepatitis to ask questions, tell their stories and receive validation and support from others affected by the disease, which kills 8,000 to 10,000 people a year.HEP CWhile hepatitis is defined loosely as a disease that affects the liver, the effects of hepatitis C reach far beyond that definition. Often people who have the disease don't even know they have it, because they can remain asymptomatic for five to 15 years after infection. Overwhelming fatigue, crippling joint and muscle pain, headaches and cognitive problems such as short-term memory loss are among the most common symptoms of the chronic stage of hepatitis C.Cirrhosis, liver cancer and liver failure are the life-threatening aspects of the disease and occur in the chronic stages. According to the American Liver Foundation, liver failure as a result of chronic hepatitis C is the leading cause of liver transplants in the US.Before hepatitis C virus (HCV) was identified in 1989, it was known as non-A, non-B (NANB) hepatitis, which began showing up in people who had received blood transfusions. In 1990, an antibody test was developed to screen the blood supply, and today the risk of new infection from transfusion is less than one percent. Anyone who had a blood transfusion before 1990, however, should be tested for the virus.While it has been determined that HCV is a blood-borne virus that can be transmitted by blood transfusions and IV-drug users' contaminated needles, a significant number of people with HCV -- nearly half of all cases -- do not fall within the parameters of those risk factors. One news station recently overemphasized sexual transmission as a possibility, but only one percent of total HCV cases have been determined to be a result of sexual transmission. There are still a lot of unanswered questions about how people become infected with HCV, but one thing is clear: HCV is not likely to be transmitted through casual contact.There is no cure and no vaccine for hepatitis C. Because so little is known about the disease, doctors don't have all the information they need to recognize the symptoms and treat them.And therein lies one of the biggest problems people with HCV face, which Webb discovered the hard way."HERE, HAVE A PROZAC""It came very insidiously, which is most often the case," Webb said of her own chronic hepatitis C. "When I first got the transfusion in '81, within a few months I became very ill. They said it was some kind of hepatitis and called it 'non-A, non-B,' but they hadn't identified the exact virus. But I got better." It wasn't until 1987 that Webb began experiencing the symptoms associated with the chronic stage of the disease, "but there was no test for hepatitis C at the time. Nothing showed up." So the doctors told her she was physically fine and offered her anti-depressants. "And I cooperated with that theory for a while," she said. "As time went on I became more and more ill. I was unable to get out of bed for weeks at a time, so I had to quit working outside the home."In 1989, the hepatitis C test became available, and she was diagnosed with the disease. "At that point virtually nothing was known about the disease," Webb said. "They had just identified it and that was it. Because of the word 'hepatitis,' physicians were basing opinions around other forms of hepatitis. But hepatitis C doesn't manifest itself in the same way that other forms of hepatitis do. It produces a lot of symptoms that normally aren't associated with hepatitis."At that time, Webb's blood tests began to show evidence of autoimmune markers, which indicate autoimmune diseases. Webb explained that scientists are now finding that hepatitis C can trigger and mimic hyperactive autoimmune diseases. These diseases occur when the immune system somehow loses the ability to separate the invading virus from healthy tissue and begins attacking the healthy tissue. Lupus and rheumatoid arthritis are examples of such diseases. But because "it has always been assumed that autoimmune markers are not present in other forms of hepatitis," doctors told her that the symptoms weren't real. They told her it was psychological."So I had to go through the first five years after diagnosis fighting with doctors to make them believe that these symptoms really were real," Webb said.She had the same problem with enzyme tests. Enzymes signal inflammation in the liver, but her symptoms didn't correlate with her enzyme levels. "Your symptoms are way out of proportion with your numbers," Webb recalled the doctors saying, "so it can't be happening. Here, have a Prozac."Webb later discovered that doctors had written in her records that she was complaining of such symptoms because she wanted to be pampered or because she wanted a relationship with a doctor. One doctor wrote in her records that she was suffering from a fictitious disease -- despite the medical records showing scientific evidence of muscle degeneration and several autoimmune markers present in her blood. Webb said that it is common for people with hepatitis C to go from doctor to doctor looking for someone who will help them, all the while being labeled "hysterical" or a "malingerer," amassing more evidence of a psychiatric problem.Webb explained that depression is involved with hepatitis C, but it is a result of the disease rather than a cause of the symptoms. "Besides, who wouldn't be depressed when you have to give up your job and you aren't able to take care of your kids?" she asked.Webb said that doctors' assertions that nothing is wrong create a profound sense of hopelessness in the patient. "You just feel terrified. You're desperate for someone to be able to identify it. Most of us believe every disease can be identified whether it be cancer or whatever it is and that doctors will be able to treat you or tell you how it will progress," she said. "I couldn't believe that nobody could figure out what was wrong."The disease is so debilitating that "you can't work, you can't take care of your kids, you can't cook a meal, you can't run a vacuum, and most of those things are taken for granted. You can't bathe or eat sometimes. Your whole life is crumbling down and you don't know why. You're terrified that you're going to spend the rest of your life like this."She's not a doctor, but Webb spent five years trying to convince doctors that her symptoms were real. In 1992 she gave birth to her second child. She then decided to try to "refocus" and get on with her life. While pregnant, she started feeling better, which is common among most pregnant women who have hepatitis C. But after she gave birth to her son, her health deteriorated severely to the point where she could no longer take care of her son.After that, she stopped cooperating with the doctors' theories that her illness was psychological. "I knew I was sick."She could no longer get out of bed, so she got some medical books, a medical dictionary and her medical records and started studying. She studied general medicine, specialty areas, gastroenterology, endocrinology, cardiology, etc. in an attempt to better understand the symptoms her doctors refused to recognize. Her studying gave her the terminology and knowledge she needed to keep up with the most current research, discoveries and treatments. But it wasn't enough to convince doctors that her illness was not psychological.Despite all of her problems with doctors, however, Webb is quick to blame the medical profession as a whole rather than her individual doctors (of which she has had many) for the skepticism surrounding the symptoms of the disease. "The doctors themselves are under a tremendous amount of pressure from their peers to be able to scientifically prove their diagnoses, and if they can't, they rule it as negative. So all of things that were happening with hepatitis C were difficult to prove under the existing theories about hepatitis," she explained, adding that doctors are beginning to understand hepatitis C better as more information becomes available.In early 1994, Webb met the doctor who would finally give her hope. She went to the Mayo Clinic in Rochester, NY during a period of such severe illness that she needed help walking and had to use a wheelchair. It was there that she stumbled upon Dr. Albert J. Czaja, who happened to be on the cutting edge of hepatitis C research. Webb credits Czaja with saving her life. She had finally found someone who validated her symptoms, allowing her to start dealing with the disease. "If I know what it is, I can deal with it," she said.Webb immediately developed respect and trust in Czaja because, as she said, "he listened to me and wasn't threatened by my knowledge." He became Webb's primary care physician, and together they began developing her treatment.Even though Webb had finally found someone who would recognize her symptoms as medical problems, those symptoms weren't easy to treat.Part of the problem is that an autoimmune disease is the opposite of a viral disease. "In other words," Webb explained, "you treat one and make the other one worse. If you treat the autoimmune disease by suppressing the immune system, it can't fight off the virus, which will replicate more freely." If the immune system is stimulated, it will attack more body tissue.Right now, interferon, a type of chemotherapy that helps fight the virus, is the only drug that's been approved by the Food and Drug Administration for the treatment of hepatitis C, but it has only a 25-percent success rate. Webb recently completed an interferon regimen in April. The treatment brought on a brief remission, but she is now starting to come out of it. She was recently notified by her doctor at Mayo that she is experiencing a significant worsening, and he wants to check her liver function monthly rather than in the usual three-to-six-month intervals. He has also suggested starting another round of interferon in September or October.One of the main reasons that so little is known about how to treat hepatitis C is a lack of funding.According to the Centers for Disease Control, HCV affects more people than HIV (3.5 million Americans known to have HCV vs. 700,000), yet the National Institute of Health spends $1.15 billion a year on HIV and AIDS research and only $4.5 million a year on HCV. There is no funding for the treatment of chronic hepatitis, but $500 million is spent annually for AIDS treatment.In discussing this margin, Webb explained, "I'm not trying to say that AIDS should not have that funding, and yes, AIDS is a more lethal disease than hep C. [People with HCV] can live out their whole lives before hep C damages the liver. But because of the number of people who have it, there will be more people who will die from hepatitis C in numbers. Because of the fact that so little is known and the disease is still very new in terms of general public knowledge about it, there's not very much pressure on the NIH." Webb said that there is a political movement afoot. But right now, a lot of people aren't aware of the problem."People don't realize how many people in the United States have it that we know of," Webb said. "The average person needs to understand that it's not a lifestyle disease. It can happen to you. A lot of people don't know how they got it, a lot of people don't know that they have it. There needs to be more awareness."And that's where "Ask Emaliss" comes in.ASK EMALISSAccording to Webb, the Internet is starting to play a crucial role in the movement to raise more awareness about HCV. It's one of the best ways for people with hepatitis C to communicate with one another while also spreading the word about the disease.Webb went online in January and began communicating with other people affected by the virus through e-mail lists and bulletin boards. Eventually, her knowledge and experience became well known among those affected by the disease. People started replying "ask Emaliss" (Emaliss is Webb's e-mail name) on the bulletin board when someone would ask "does anybody know anything about..." That's when she started thinking about creating a web site."In a way, I spent seven years in virtual isolation because I didn't have a modem, and I couldn't work. It was just me sick in bed, and all I could do was study. Because of all those years of studying, I'm in a way fortunate, because it's caused me to be more compassionate toward people who are in a similar situation. It's allowed me to gain knowledge." When she started thinking about creating a web site, it was with that in mind. Webb said that there are many good medical web sites with information about hepatitis C, but hers is about people and their stories and their problems. "A lot of people find that much more interesting to read. What people want to know is, 'What's going to happen to me? What am I going to tell my five-year-old daughter about this? What do I do when I can't work?'"So "Ask Emaliss" debuted in May. Its main feature is "Shared Voices," in which people who are affected by hepatitis C can ask questions and tell their stories. Webb answers these questions with the knowledge she has gained through her experience and activism, including information about the latest research, advice on how to talk to doctors, what to expect from certain tests, etc. While she does not dispense medical advice, she does impart a certain wisdom gained through her personal experience and her intense interest in current research.In the most recent issue, Webb printed a letter from a man who wrote to her saying that he was starting to think that because he had seen so many doctors, his problems were mental rather than physical. She replied, "I'm truly sorry that you've doubted the origin of your pain and have begun to question your own sanity. This often happens because of many reasons, many of which have to do with the doctors themselves. I know this sounds a bit harsh, but often, when they don't know what to do, or can't quite figure out what the problem is, they often turn the responsibility back on the patient. For instance, back at the turn of the century multiple sclerosis was known as the 'faker's disease' simply because we didn't have the tools or knowledge to understand the disease. But yes, chronic pain and unanswered questions can CAUSE psychological problems (that's normal) but the symptoms are not caused by psychological problems."A woman named Bev wrote to Emaliss asking if some of the medical problems she's been experiencing might be a result of her hepatitis C, despite the fact that her liver enzymes, which often indicate inflammation of the liver, were normal. "I'm feeling pretty desperate and ill and I so very appreciate having someone to ask about this stuff. My docs have seemed very unconcerned about the pain which I've found to be excruciating," Bev wrote."I certainly know what it's like to have so many questions and fears, piling up to a point where the anxiety over the unanswered questions become almost more to bear than the disease itself," Webb replied. She went on to explain why enzyme levels cannot be relied upon to evaluate symptoms.Along with answering people's questions about the disease, Webb also writes editorials and posts HCV facts and statistics in her continuing mission to inform people about the disease. There is also a page on her site about HCV-Activist, a group established in May to increase awareness and influence funding bodies."Ask Emaliss" helps people affected by hepatitis C by providing community, support and validation. "It helps people by telling them, 'yes you have this disease and it is real,'" Webb said.But "Ask Emaliss" also helps Webb. "I'm unable to work and contribute," she said. "This is something I can do. This is the only thing I have to give, and this is what I can do to help. I would give anything to have my health back and go back to my career in marketing, which I loved, but I don't have that option so this at least makes me feel like I'm doing something that's worthwhile."Her advocacy doesn't stop on the World Wide Web, however. For people who don't have access to the Internet, she prints out a copy of "Ask Emaliss" and photocopies it for them. She also wants to start local educational support group for people who have Hepatitis C or are interested in learning more about it.On her "Ask Emaliss" biography page, Webb explains her drive in this way: "Sometimes it seems, some must suffer in order for many to learn and make things better for others coming up from behind us. Even though this may sound grandiose I must either believe it or I must give up. I've decided to believe it."Above all, Webb said her ultimate wish is this: "I really just want to live long enough to see my four-year-old son graduate from high school."