Together, our stories
can change the way
the world sees viral
hepatitis. The stories
of those living with
or impacted by
viral hepatitis can
help educate and
raise awareness,
provide support
and inspiration,
tackle stigma and
discrimination, and
highlight the true
impact of this global
disease.
Each month we share the story
of someone whose life has been
affected by viral hepatitis. This
month, we hear from Evelyn
McKnight from the USA who shares
her story.
“
In the autumn of 2000, I was
diagnosed with breast cancer. I was
assured that it was just a little bump
in the road of life, but this diagnosis
changed my life in a profound and
permanent way in a way that I could
never have foreseen.
I was shocked when test results
came back positive for hepatitis
C because I had no risk factors
and no explanation for how I had
contracted this disease. As the
doctor questioned me about sexual
practices and substance use, anxiety
welled up inside me. The questions
embarrassed me so much that I
couldn’t meet their eyes. I quickly
left the building. I walked the
labyrinth of hallways, my confusion
increasing with each and every step.
I didn’t know how I could move
forward with courage in my life with
hepatitis C. If I were to survive the
breast cancer, I didn’t know how
I could go forward from there as
a wife, a mother or a healthcare
provider myself.
I felt so stigmatized by my diagnosis
that I told nobody about it, not even
my family. I walked along a lonely
road all by myself. I didn’t want
anyone to know that I had a disease
that was associated with risky
behaviour. I was afraid that I would
be judged.
Public health authorities
investigated and found out that 99
of my fellow cancer patients had
become infected through unsterile
injections.
14 hep Voice JANUARY 2019
Wall of Stories
Hepatitis C diagnosis has huge
repercussions for patients, their
families, the medical community
and the general public. People suffer
physically, emotionally, socially
and financially. At least six people
died, not from the cancer, but from
hepatitis C.
89 lawsuits followed, dividing the
community between supporters of
the medical system and supporters
of the patients. I would venture to
say that many in the community
are still struggling to get past what
happened - I know that I am.
I grieve for the families who have
lost loved ones to the disease and I
feel betrayed by a healthcare system
that transmitted a life-threatening
disease to me and to innocent
victims through negligence.
In their honour, I am working to
prevent what happened to me from
happening to anyone else. I used
the settlement money from my
lawsuit as seed money to establish
the Hepatitis Outbreaks National
Organisation for Reform, or HONOR,
which is dedicated to the prevention
of hepatitis through injection safety.
I have vowed never again to let
stigma control my life and I speak
out against it at every opportunity.
It’s rewarding to share my
experience with others and to pass
on hope for life with hepatitis C.
”
watch evelyn tell her story
on the TEDX stage at
bit.ly/evelynWHA
“I felt so stigmatized by my
diagnosis that I told nobody
about it, not even my family. I
walked along a lonely road all
by myself.”
See more stories and submit your own at
www.worldhepatitisalliance.org/wall-stories
hep Voice
JANUARY 2019 15