I know you for a few years, but I don’t know anything about you…how being an artist fits with the field of patients advocacy?
Firstly I want to say Emilia will be dearly missed, she was passionate and happy about everything. Secondly, I want to say that I’m honored to be here and to be a part of a new, improved ELPA.
Regarding your question… for me being an artist is something that I was born with, and being a patient advocate is a choice. I chose to convert my misfortune into fortune. When I found out that I have HCV, I’ve struggled for a few years, I’ve gone through many phases from self-pity, shame, anger until I decided that I’m going to fight this. First I fought for myself and then I started to do that for others and I’ve been doing this for eight years now. And if you ask me, creative thinking helps every step of the way. So my short answer is – I think it fits very well!
Ivana, from a patient advocate perspective and of course from a woman perspective, Do you think Hepatitis C affects men differently than women?
Yes and no. if we are talking about countries where religion has a great influence, then we are talking about the position of the women which can be problematic even without hepatitis, so I don’t think we can say that hepatitis has a male or female side, except the biological point of view. Having hepatitis certainly means that your life is changing, be male or female.
Ivana, have you ever had a problem being a woman and doing what you are doing?
Never, as I have never had a problem being hepatitis positive but it depends a lot on your personal attitude. I did not allow that to be a problem, but I am also lucky not to live in an orthodox Jewish or Muslim community where such a diagnosis can be a reason for exclusion from the social environment for both women and men. Also, fortunately, or unfortunately, I don’t have children, so the specifics of this job don’t affect me, otherwise I’m not sure how I would organize frequent travels, hours and hours of meetings, emails, being on the phone half of the day, and working hours that don’t really exist because you work all the time. Otherwise, I don’t think it’s easy if you want to be a mother a wife, and career-oriented.
And you Ivana, how are you managing a “Burn out” problem in your association or for you especially?
I am overjoyed that we mentioned burnout because I think this is a very important topic and we should dedicate a special meeting about it, where the lecturers will be psychiatrists or and life coaches. I personally read everything that comes in to my hands with this topic and today we are lucky that everything can be found on YouTube, but I think that this is a very important item in our work and that we should provide all ELPA members and ourselves. in the near future. expert help on this topic. As I have already mentioned, this type of work is specific and requires a lot of skills, and if we add to that everything that most women have in addition, mother, wife, housewife, friend … the pressure is huge. So I suggest that in the near future we organize a meeting on this topic. Maybe for starters, we can give an opportunity to the members to express their thoughts about it, so we can have a clear picture of what the needs are. For sure we need to talk about it more.
IVANA working group…present the 2 projects,
I don’t think we have time to present two projects, but I will try to explain in a few sentences what it is about. Both projects are about women and for them. The first one called HepFreeBadge and it is for professionals in the cosmetic industry about the risks of hepatitis transmission and about sterilisation. The short-term goal is to educate employees in beauty parlors. The long-term goals are to change the legislation and to promote HepFreeBadge as proof of excellence for the customers, the customers would know if they see the badge that this place is safe. At the moment, in most countries, a beauty parlor can be opened by anyone, regardless of the level of education, and there are no precise instructions on sterilization. Today, numerous treatments are performed, during which micro-injuries are made in order to encourage the skin to regenerate, various liquids are injected, and permanent make-up is done, which is actually a tattoo. My question is why should this be treated differently than basic dental work?
Another project is called Woman and Hepatitis B. Unlike hepatitis C, HBV is a lifelong disease and it affects various phases that a woman goes through in life, from sex to pregnancy, childbirth, breastfeeding.
This project has focused on women, who are someone’s girlfriends, wives, mothers, through 12 topics. Experts would be engaged for each topic and it would be published either in the most widely read women’s magazine or the experts would be guests in the most-watched show, intended for women.
So the target group is a woman, but the focus is on the general population and the content of the given topic will be adapted to an ordinary woman without big medical terms and focused on real-life situations as an example.
So we will see!