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Caring Ambassadors is raising awareness of hepatitis C to help de-stigmatize HCV+ patients, encourage the uptake of HCV screening and testing, and support those with known infection by sharing patient stories through NPR’s StoryCorps. Please enjoy the stories we have collected so far. We will continue adding more so come back often!
Lucinda, a nurse, an advocate, an author, a patient and a brilliant storyteller shares her journey in a heartfelt and honest manner. Gather the nuggets of insight and wisdom she shares through her life through hepatitis c, mental illness, unrelenting advocacy and her beautiful relationship with Alan Franciscus.
Alan, a nationally renowned trainer, executive director, and editor-in-chief of HCV Advocate shares his story led by his friend and fellow advocate, Lucinda Porter about his journey. You will learn about Alan and the stories he holds of the countless patients, educators, and advocates about stigma, discrimination and triumph.
Larry is a natural advocate, a father and a brave man who humbly shares his story about life and his addiction. In September 2016 he shared his story with the Chicago Tribune which helped to loosen the Medicaid restrictions in Illinois. Larry is a cool man – listen to his philosophy on anger and recovery.
Ken has seen a lot of injustice in his lifetime but, none greater than the denial of hepatitis C treatment based on current substance use. Ken is knowledgeable and sheds light on the topic of hep C. from a boots on the ground perspective. Listen to Ken as he lays out an articulate argument for why he and others like him should be treated and cured of hep C.
Peter is newly diagnosed and has just taken the first steps toward improving his health. Peter’s sincerity and conviction to a new path shines through during the interview. Listen to Peter as he spills his heart and talks about the regrets and the pitfalls heroin use.
Attempting to regain control over his life, Jose traveled from Puerto Rico for substance use treatment. When he arrived found himself once again battling the temptation to use. He eventually backslide and wound up in jail. Listen to Jose’s tale of hep C diagnosis, stigma and incarceration.
Caleb is an Iraq war vet and a survivor of the hepatitis C epidemic. Not only has Caleb been impacted by hepatitis C but so has several members of his family including his mother. Caleb’s unique perspective has been shaped by his bouts with substance use and his travel throughout the United States. He has seen lack of access first hand. Hear his take on harm reduction and access to hepatitis C treatment.
Despite her struggle with substance use, Angel still has the presence of mind to help and advocate for others. Listen to Angel’s tale of what it’s like to be homeless and living with hepatitis C. The interview was eye opening for myself and Angel as she learned the truth about the denial of hepatitis C treatment based on current substance use.
Clara W. & Dante W.
Life comes full circle for Dante and his mom, Clara. At a young age, Dante lost his father to liver disease. The death of his father and a job interview with Jill Wolf would ultimately change the direction of his career. Listen to Clara recount the impact that Dante’s father had on her life and the life of her son.
Audra T. & Linda T.
Linda and Audra are a fierce mother-daughter duo. Both are equally strong and passionate but, nothing could prepare Linda for an unexpected phone call from her doctor. In the summer of 2009, Linda’s life would dramatically change. Press play and listen to Linda and Audra’s heroic journey.
Karen Freshwater’s energy is simply refreshing! She received an initial diagnosis of hepatitis non A/ non B in 1974. She pursued a cure after receiving confirmation of hepatitis C in 2000. Karen’s story is amazing, she is small but mighty. Press play, listen to her story and get inspired!
Diagnosed with hepatitis C in the late 90’s, Paul experienced 48 long weeks of interferon treatment. As Paul moved on with life after treatment, he received the devastating news that his hepatitis C had reappeared. Listen to Paul’s story of survival and perseverance.
“Love the one you’re with, if it feels good do it. Sex, drugs, and rock and roll”, was the mantra of Skip Benz’s generation. Skip was riding high and living life when he received a hepatitis C diagnosis. Skip’s charisma shines through as he provides details of his amazing life and his journey to the cure of hepatitis C.
Cathy and Jill had an unlikely connection. Ozzie, Jill’s mother’s dog! Jill and Cathy first crossed paths after Cathy gave Ozzie to Jill’s mom. Cathy and Jill soon became friends on social media where another connection was made. Cathy had been struggling for years in secret with a hepatitis C diagnosis. Then a social media post by Cathy about her struggle with HCV connected the two in the most meaningful way. Cathy’s encounter with Jill highlights the old saying that “There is no such thing as happenstance”. Press play and listen to Cathy’s story.
Cynthia and Tom are the parents of Maggie. After being tested for hepatitis C at the Waterfront Blues Fest they talked to Jill about their daughter Maggie who had just been diagnosed at 33 years old with HCV. That conversation would eventually lead to a friendship and advocacy relationship that would put Maggie on a path to the cure. Listen to Cynthia and Tom talk about life after Maggie’s cure.
Cynthia & Tom
Illinois State Representative Michael McAuliffe and Kim Morreale McAuliffe – Kim lost her father to liver cancer directly related to undiagnosed – or late diagnosis – of HCV. Just over a year after Kim’s father passed, Michael’s uncle passed of advanced liver disease caused by HCV. This sparked a Governor appointed Illinois HCV task force. They share a heartfelt story of loss, advocacy, and tenacity!
Kim & Michael
Over the past several years Walter has struggled with substance use. He has had an uphill battle. Throughout that battle he’s come to the conclusion that hepatitis C is a contributing factor that is impacting his health and motivation. Listen in on how hepatitis C has affected his life and why he believes that substance use shouldn’t automatically exclude a person from being treated for hep C.
Born and Raised in Chicago, Matthew has struggled with substance use for the past 7 years. Within that time frame he lost everything and also contracted hepatitis C. Matthew tells it like it is and doesn’t hold anything back.
Sammy dodged a number of bullets and shares with us some shape-shifting moments in his life. He reflects on his youth when he was in and out of jail. He talks about two important classes that changed his direction. And, he helped a friend dodge a bullet by encouraging him to get tested and today stands cured, along with Sammy.
Louis has struggled with substance use since his teens. His addiction eventually caused him to be infected with hep C. Louis gives us a look into his past and how it shaped his experience. He also has a message of hope for those that continue to struggle.
James was diagnosed with hepatitis C in 1989. Listen to James as he talks about feeling doomed and the steps that he took to once again find hope. James provides insight on the impact of being denied treatment for hepatitis c and the effect that it has had on his life.
Stephen is an advocate and a beacon for progressive change. Born and raised in Chicago, Stephen tells us of his exposure to drugs as a child and how that interaction effected the rest of his life. Hear his voice and learn from his experience.
Facing many hardships, Brandon turned to substance use for escape. While incarcerated he was diagnosed with hepatitis C. The diagnosis in conjunction with substance use ultimately impacted his life. Hear Brandon’s take on the barriers that he now faces in trying to access hepatitis C treatment and his new found motivation for not giving up.
Amanda survived, as she says, even when she shouldn’t have. Listen in as Amanda articulately shares her experiences with her family, school, the medical system, and her fight towards eradicating HCV from her body. You too will be glad she survived, even when she shouldn’t have!
Kathie so articulately shares her experience as an advocate, a professor, a former heroin user and a cured HCV patient. Listen as Kathie discusses her experience of living with no sense of future self and an expectation to die in 10 years fueling her to become a workaholic. Today Kathie talks about her new future self, and her ability to see beyond 10 year increments and her hopes and dreams of her future.
Kathy M. & Peter M.
Kathy and Peter so beautifully share their story, painting us a picture of true love, commitment and powerful partnership. Listen as Peter reflects on living with both HIV and HCV; the impact of stigma; the benefits of being married to a nurse; and the power of a loving, nurturing partnership on health, spirit and wellbeing! Kathy and Peter, you are a powerful couple demonstrating true love, commitment and communication – thank you!
Mary’s story reflects on the importance of the patient-doctor relationship and its impact on health, empowerment and self-motivation. Mary is a TWICE cured patient – once when she was 16 years old and diagnosed with leukemia, receiving an experimental (and curative) procedure that would eventually give her hepatitis C; and second when she cured her hepatitis C, acquired through the experimental procedure that cured her of leukemia. Listen to Mary’s powerful story and why she chose to bring her physician, Dr. Don Jensen.
Mary & Dr. Jensen
Listen to the story of old friends who just met. Maggie and Jill talk about how Maggie contracted HCV, likely on the day she was born, and didn’t know until she was 33! Maggie talks about moving from a disempowered patient to an empowered self-advocate who fought her battle towards gaining access to medications and a cure. Listen to this friendship unfold.
Dr. Alicia Suarez shares her journey from learning of her diagnosis at age 19 to accessing her cure at 40. This heartfelt story reflects Alicia’s personal journey towards disease acceptance, patient empowerment and advocacy. Hear Dr. Suarez’s perspectives as a professor, a wife, a mother, an advocate, a self-proclaimed “freak”, and a cured HCV patient. Alicia is fierce, bold, and honest.
Dan & Sharon
Dan and Sharon tell their story, as a loving couple, of how far they have come in their relationship.
Dan received a liver transplant on February 2, 2015 and tells his story not quite two months post-transplant. You will feel the love between this couple and understand the power of gratitude.
Corinna is this country’s hepatitis Hero! Listen to her journey through life and how she became the face of hepatitis in our federal government.
Dr. Navin Vij reflects his heartwarming, insightful and unique story from the perspective of ‘physician as patient’. Born at only 29 weeks, and with his beloved mother right by his side, Navin’s first few weeks of life were full of life-saving procedures. Two plus decades later, as the result of a job-related needle-stick injury, Navin, a then resident physician, learned he had chronic hepatitis C. Listen to his beautiful storytelling style and feel the potential of a cured, hopeful, ambitious and young medical professional looking to change the face of hepatitis C.
Sarah & Laura
Listen to Sarah (left) talk to her friend, Laura (right) about her journey in tackling liver disease caused by hepatitis C. Sarah’s bravery, selflessness, kindheartedness and determination will warm your heart. Thank you, Sarah and Laura, for sharing your friendship, wit, time and story with us!
Randy & Kim
Randy is the co-founder of the Caring Ambassadors Program. Randy and his wife, Kim, discuss their journey from Randy being diagnosed with hepatitis C to his cure.
Kaisa shares her story of immigration, the difficulties adjusting to American life, and how this contributed to her eventual drug use and acquisition of HCV. Kaisa learned she had hepatitis C infection while incarcerated and she shares her inspirational story of recovery, cure and motherhood.
Gene shares his story of living with HCV, the experience of being on a liver transplant list, and his process of obtaining a new liver. Gene discusses the impact of living with HCV on his wife and daughter, and honestly captures the experience of stigma that those with HCV may experience.
Bea shares her story of growing up in a small town and exploring her ‘hippie’ side during the 1960’s and 1970’s. Bea takes us through her adventures with drug addiction, recovery, marriage, motherhood, spirituality, and obtaining an HCV cure. We hear her perspective on the impact of silence and stigma on HCV and addiction.
Dr. Toyin Adeyemi shares her heartfelt story of being a mother, a doctor, an activist, and an African woman in Chicago. Toyin talks about her interest in the human interaction portion of her job at Cook County Health and Hospitals System’s Ruth M. Rothstein CORE Center, a center of excellence for the treatment of infectious diseases. Listen to her views on gender, treatment and the future of HCV.
Steve is our Program Director, Jill’s uncle and lives in New York City. Steve was diagnosed with hepatitis C at the time of his cirrhosis and liver cancer diagnosis. Today Steve is cured of his HCV and quickly shares some of his thoughts about this life changing event. He made Jill laugh – let’s see if you will, too.
Sanford Gaylord is an artist, and creative activist from Chicago. After receiving a life changing diagnosis at the age of 24, he dedicated his life to making a difference in the community. Sanford took his creative skills in the arts and applied them in what he calls creative advocacy. Listen to Sanford’s tips on how creative advocacy can be used in the fight against hepatitis C.
Jenny shares her beautifully raw story of losing her mother to liver cancer caused by HCV. There are multiple moments that will send chills through your body, including when Jenny talks of her last moments with her mother and what she will take with her as she approaches her own experience of motherhood.
Andrea shares her story of losing her sister, Adrian, to liver cancer when she was just 15. Since then Andrea has formed one of the only non-profits dedicated to liver cancer in the US.
Lindy shares her story of ups and downs, from a student at the top of her class, to obtaining her medical degree, to battling with addiction, liver failure, and near-death experiences. Lindy, now an addiction professional, talks about her possible exposure to HCV and her process of liver regeneration.