NEWS: Helping others with Hepatitis C 
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 NEWS: Helping others with Hepatitis C

Helping others with hepatitis C

Source: http://www.***.com/
John Helin, who has hepatitis C, at Cooley{*filter*}inson Hospital in
Northampton, where he leads one of five support groups in the area for
people living with the disease.


Tuesday, November 19, 2002 -- John Helin of South Hadley was 48 years
old when his liver started to give out. He first felt sick in October
1995, experiencing intense stomach pains and vomiting often. Helin is
a recovering {*filter*}ic, and he thought that his drinking had finally
caught up with him, or that maybe he had an ulcer.
At first, he was able to keep his restaurant job. He stopped drinking.

But by January, his condition worsened. His stomach was distended and
he ended up at Baystate Medical Center in Springfield, where he was
told that his liver was severely damaged. It wasn't an ulcer that was
causing his problems. And it wasn't the {*filter*}. Helin was diagnosed
with hepatitis C.

"My liver was shot," he says. "Throw {*filter*} on top of hepatitis C and
your liver is in bad shape."

Plan B

Helin was not an intravenous drug user and he had not received a {*filter*}
transfusion, two of the most likely ways to get the disease. To this
day, he says, he does not know how he contracted it.

"I was in denial. I did not want to hear about that. I quit drinking
and I was ready to turn my life around. But then they told me that I
almost died," he says, "and I was ready to hear plan B."

Plan B, prescribed by Dr. Evan Benjamin of Springfield, was a liver

Helin's name was on a list for two years before a donor was found.
Organ-transplant patients are susceptible to certain cancers and,
after his surgery, Helin was diagnosed with Burkitt's lymphoma, a rare
lymph-node cancer. He is still feeling the effects of the

"I'm a real lucky guy. I can give you a thousand reasons why I should
be dead," he says, referring to his behavior while drinking. "Now I've
got a new life. I know I can't save the world, but I can help some

And so Helin, now 56, has devoted himself to starting and running
support groups for hepatitis C patients and their caregivers. He has
five under way at the moment in Northampton, Amherst, Springfield,
Westfield and Palmer.

"We have it [hepatitis C] and we deal with it," he says. "These groups
let people know they are not alone, and they give them some hope."

A stigmatized disease

Hepatitis C is a viral disease that was first identified in 1989.
Because it can be spread through intravenous drug use, it carries a
stigma. The fact is, many people contracted hepatitis C through {*filter*}
transfusions conducted before {*filter*} supplies were tested for the
virus, says Judi Kaplan Elkin, executive director for the New England
chapter of the American Liver Foundation (ALF) in Newton. Kaplan Elkin
estimates that 10 percent of those with hepatitis C virus (HCV),
received it from an unknown source.

"Hepatitis C is spread through {*filter*}-to-{*filter*} interaction," says Dr.
David Pleet, a gastroenterologist with Springfield Medical Associates
and one of Helin's doctors. Just a small amount of infected {*filter*} is
enough to pass on the virus, so shared razor blades and toothbrushes
can transmit the disease from one person to another, says Pleet. A
shared needle remains the primary source of spreading HCV.

"They call it the silent epidemic," says Helin. "There are people
walking around with it who do not know they are carriers."

Says Kaplan Elkin, "In the next 10 to 20 years, more people will die
of hepatitis C than of HIV." Almost 4 million Americans have been
infected with hepatitis C, according to ALF, and approximately 70
percent of that population do not know they have it. ALF reports that
8,000 to 10,000 Americans die every year of hepatitis C, and the
Centers for Disease Control and Prevention in Atlanta estimate that
the number of annual deaths from hepatitis C will triple by 2023.

Kaplan Elkin says her organization focuses on educating the public
about who is at risk from past experience.

Not everyone needs to get checked, she says, but there are specific
risk groups that should. "If you had a {*filter*} transfusion or organ
transplant pre-1992; if you used IV {*filter*}, even once; if you were on
long-term kidney dialysis; or if you are an EMT worker, you should
talk to your physician and get checked," she says.

Individuals infected with HCV can go for years without showing
symptoms, which is why it is important for anyone in these risk groups
to get checked, according to Kaplan Elkin. New cases have been
declining in the past decade, she says, since the nation's {*filter*}
supply has been secured. But now that science understands it, more
people who are carriers are being diagnosed, and needle sharing
continues to spread the disease.

No judgment

In Helin's groups, though, it doesn't matter where the disease

"People can participate, or just listen. They know I've got hepatitis
C," Helin says. "After they get into the meeting and see others in a
trusting atmosphere, they feel safe."

John Helin received his liver transplant in Boston. He spent six
months there in recovery and took part in support groups for
organ-transplant patients as well as for those with hepatitis C. And
he had been to {*filter*}-recovery sessions for years. In those groups,
he says, he gathered information from other members and found he had a
story to tell and help to offer.

"I watched and listened," Helin says. "And I thought that maybe I
could do this. It was a leap of faith for me."

When he returned to the Springfield area in the summer of 1998, he
says, he got to work on starting his own group. He was surprised to
find that no evening group was available.

"I looked for a co-chair to start the group, and no one stepped up,"
he says. "So I decided to go it alone."

With the help of Baystate Medical Center, Helin put the word out, and
people came from Palmer, Wilbraham, Westfield, Chicopee and
Springfield. Almost 20 people showed up for that first meeting, held
in May 1999 at Baystate.

Then a Hampshire College student got Helin's telephone number and
asked him to help start a group in Amherst. That group held its first
meeting in early 2002. By June of that year, three more groups were
meeting in Northampton, Westfield and Palmer.

Helin helped find meeting rooms, got fliers printed and set up
programs for each meeting.

"John brings his experience to the meeting," says Donna Zucker, who
helped start the Northampton group with Helin. "He has the disease,
he's knowledgeable and he brings interest. He's doing a wonderful
thing for the people of the Pioneer Valley. He is so happy to be
alive, and he wants to give something back."

Fear and confusion

People's reactions vary when they receive a diagnosis of hepatitis C,
Helin says. Because of the behaviors sometimes associated with it,
some want to keep it confidential, afraid their jobs might be
jeopardized by the news.

Some have difficulty confronting the future and finding information.

Treatment for hepatitis C has been improving, says Helin. In the years
after the disease was first identified, treatment was only 25 percent
successful, and the side effects were severe. But today, a combination
of {*filter*} has increased the success rate, and currently 50 percent of
those who receive therapy recover, he says.

At Helin's monthly meetings, which are confidential, people can talk
openly about these matters and personal issues, if they wish.

The main idea is for members to provide emotional support to one
another, he says. And he brings his story to the table.

"I'm an open book. I let them have my story," he says, "and that
usually comforts them."

He also provides speakers on alternative healing who discuss herbal
remedies and relaxation techniques. And he invites representatives
from drug companies to talk about new treatments. But mostly he
provides an open, judgment-free forum.

Bone tired

Helin says he has trouble getting going in the morning. Though he has
a new liver, the hepatitis virus lives in his {*filter*}. It is a
slow-acting disease, and doctors do not know how his new liver will
react over time.

People with hepatitis C complain of being bone tired and having no
energy. "It's like having a strong flu," Helin says. But as long as he
can pull himself together and get out of the house, he says, he is
going to continue to try and help others.

"I'm not going to die with a can of beer in my hand. I get a lot out
of helping others. It is really that simple. I'm going to continue
beating the drum as long as my health allows."

Related story:

Area support groups

Mon, 09 May 2005 04:06:17 GMT
 [ 1 post ] 

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