Real Stories Series: “Knowing that you have this disease can be a catalyst…”

Today, we continue our Real Stories Series with people how are living with hepatitis in honor of Hepatitis Awareness Month.  As some of you know, this is the second year of National Hispanic Hepatitis Awareness Day and we will be continuing with a series of webinars throughout June. Stay Tuned!

A big thank you to all those who were interviewed or shared their stories with us about living with hepatitis.  More to come in the next weeks!

Interview with Dan Rosario

1. How long have you had Hep C

I’ve had Hep C for over 40 years. As far as I can tell, and depending on my theories it is likely that I got it either through IV drug use or a homemade jail house tattoo.

2. What are the greatest challenges?

The never ending fatigue is the most physically challenging thing. And the stigma associated with having a contagious disease that few people know about or understand. I still have to keep it secret at work and in many other social situations where I simply feel people would not understand. Depression and the constant battle to do things that will pick me up spiritually and emotionally are also serious challenges. The best way I can describe it is that it’s like waiting for a bus/train without a schedule; you never really know when it (death) will get here. So far I’ve been lucky with the way I’ve managed my disease, through doing things that address the mind, body and spiritual aspects of Hep C.

3. How has Hep C changed your life?

Having Hep C has seriously changed my life. Some of the ways it has changed are very difficult, for example having to be ever vigilant that I don’t accidentally contaminate someone. Since it can ultimately lead to cancer or death, the disease has a way of putting things in perspective for you. For instance many things I took for granted such as a sunny day, a warm smile, a kiss or a hug from a loved one, the ability to work, exercise, sing, enjoy music, love, be loved and just enjoy life in general, are just a few of the things I feel I can experience on a deeper more meaningful way than before I knew I had the disease.

4. What hope do you have for your future health?

Since I’ve been living with Hep C for so long, and have been managing it in a way that I believe will prolong my longevity, at times I remain optimistic. I sometimes believe that when I do die, it will be of something other than Hep C. Those are the feelings and thoughts I experience on the good days. On my down days, I am absolutely sure the Hep C bus is coming sooner now than before. And, I have in my mind at least, started to make preparations for my family when I am gone. It’s a tough thing to accept and actually act on. I guess, it’s not unlike anyone in life thinking about their place in the world, their own mortality and what exactly will be the legacy they leave here on earth. Having said that, and having gone through 4 courses of treatment as a non-responder, I still look forward to a day when I can be Hep C free. And with all of the new developments in the field, there’s still a realistic possibility that I will one day be free of the Hep C ball and chain attached to my leg. Pray that I’m right!

5. What do you want the world to know about Hep C?

The first thing I’d like the world to know about Hep C is, that much like AIDS, it is not a disease that is easily transmitted. You must have blood-to-blood contact with an infected person. Hopefully this would take away some of the stigma associated with Hep C. Removing some of the stigma could help people to start thinking about the disease and perhaps get themselves tested. If it isn’t already happening, I’d love for it to be a mandatory that all medical personnel to have a good working knowledge about Hepatitis. This could be part of their primary education in their field, or part of their mandatory continuing education to maintain their licenses in their respective medical fields. I would also like for the people who have just been given the devastating news that they have Hepatitis, to know that it is absolutely NOT a death sentence but that it is a LIFE sentence . Meaning, that knowing that you have this disease can be a catalyst to a much more fulfilling existence in this world.

-Compiled by Bethsy Morales-Reid

@NHHAD

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