June 30, 2020
Hepatitis C carries an unjust stigma that affects who we feel comfortable sharing our diagnosis with. Who have you felt comfortable talking about hep C with?
August 26, 2020
Matt, this has been very difficult for me since I have worked in the healthcare industry for almost 30 years. I am very open, and honest about my dx. Its very sad that this stigma for all hep C positive folks is negative. And people act as if they will get it by talking to you, sitting beside you, etc. . I was cured 5 years ago, and still have this reaction from people. People assume the worst, and mostly due to their own lack of knowledge, and education. Having to explain to providers, friends, coworkers, family, extended family has become a nightmare for me. I want so badly to raise awareness of this disease and how to go about being tested properly, but I must say it's been a struggle. There are so many people in my generation that complain or show signs of Hep C, but have never been tested. This test is intricate and separate from your basic labs done annually ie; cbc/cmp. Even being in the medical field it took me years and several providers, and many dollars in copays to get the proper diagnosis. I was restless, fatigued, sick, swollen, easily bruised, had rash and liver spots on areas that were tell tale signs. I am truly interested in advocating that this lab should be performed and included on a cbc/cmp on everyone just like our other body chemistries are tested for diabetes, cancers,heart disease and many other deadly diseases. Putting people through the "questions" and "judgment" that applies after is certainly not helping people to understand the urgency of being tested therefore the disease becoming chronic, as it did for me. The basic symptoms, pt history, bruising, abdomen pain, jaundice, rash etc should be a sign to all providers that this test should be ran. If not I tell people to ask for it? Get a liver function test as well. This being said, the diagnosis would be made sooner, saving a liver, a life and much stress wondering "what is wrong with me". Now, 30 years later the damage is done, but I remain positive for my future and have even remarried. He was not happy (he did not speak to me for 2 weeks) but once we sat down and discussed the disease, he was open and happy and understanding. He proposed 2 months later, actually. Being diagnosed was a God send, explaining to my 3 adult children (my 2 sons are amazing award winning tattoo artists- imagine how they felt) with babies of their own and seeing the fear in their eyes was not easy. I went through my treatment alone, due to the anger and fear that my family had towards me. Everyone in my immediate family was tested and all were negative- Thank God- but I am still dealing with some that are just uneducated. This is their loss, but it still causes great anxiety in our family due to ignorance. Please, let's work on this diagnosis and the stigma that is attached, we are all humans and should not be discriminated against or judged just because of the commercials and articles that have been causing this stigma to continue. Education is key, and I am willing to share with anyone willing to listen. To this day, I still explain myself and get looks of worry, judged and ignored as if I'm not part of the human race. This is the stigma attached to this disease, lets all fight to raise awareness and remind the public that we are all important, and deserve quality care. Thank you for listening, and sending positivity to all diagnosed, that it will be ok, lets all help educate others to better understand. Ignorance is everywhere, but knowledge is power!
August 26, 2020
Leslie Anne Castro Moderator
August 29, 2021
At first, I felt hesitant about telling my close friends and extended family that I was willing going to receive a Hepatitis C organ. However since my transplant, I’ve shared my experience with a handful of universities, became a podcast speaker promoting Hepatitis C organ donation, and advocated on Capitol Hill sharing my experience about Hep C. I’ve also told several congenital heart forums about hepatitis C and some of them have also shared their experience with Hepatitis C due to blood transfusions in the 1970’s and 1980’s. ( Leslie, Community Moderator)