‘Successful women in ELPA’s family,’ second act

On March 8, 2021 – Women’s Day, ELPA organized ‘Successful women in ELPA’s family,‘ a talk dedicated to highlighting some success stories of women involved in ELPA. It was the occasion to listen to some inspirational stories inextricably linked to patient advocacy, liver disease, and patients‘ associations. The event was live-streamed on the ELPA Facebook page.

However, ELPA would like to continue raisingawareness and share a positive message on this topic. Thus, it decided to turn the event into 6 written interviews featuring all the guests available on the ELPA website.

FIRST EPISODE

Ivana Dragojevic, artist, President of the Serbian ELPA Member association HRONOS, ELPA Treasurer, and leader of the ELPA Working Groups on Prevention.

ELPA: In ELPA, we 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?

Ivana: 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 would 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!

E: Ivana, from a patient advocate perspective and of course from a woman perspective, Do you think Hepatitis C affects men differently than women?

I: Yes and no. Suppose we are talking about countries where religion has a significant influence. In that case,we are talking about the women’s position, 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, being male or female.

E: Have you ever had a problem being a woman and doing what you are doing?

I: 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. Still, 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.

E: How are you managing a “Burn out” problem in your association or for you especially?

I: I am delighted that we mentioned burnout because I think this is a crucial topic and we should dedicate a special meeting about it, where the lecturers will be psychiatrists or life coaches. I read everything that comes into my hands with this topic, and today we are lucky that everything can be found on YouTube, but I think that this is an essential item in our work and that we should provide all ELPA members and ourselves. I expect 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 to that: motherhood, being a wife, a friend, a daughter, the pressure is enormous. So I suggest that soon we organize a meeting on this topic. Maybe for starters, we can allow the members to express their thoughts about it to have a clear picture of what the needs are. For sure, we need to talk about it more.

E: A wish for the future…

I: I don’t think we have time to present two projectsfrom the ELPA Working Group I am the leader of, 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 is HepFreeBadge, and it is for professionals in the cosmetic industry about the risks of hepatitis transmission and sterilization. The short-term goal is to educate employees in beauty parlors. The long-term goals are to change the legislation and 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. Micro-injuries are made 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 essential dental work?

Another project is called Woman and Hepatitis B. Unlike hepatitis C, HBV is a lifelong disease. It affects various phases that a woman goes through in life, fromsex to pregnancy, childbirth, breastfeeding.

This project is focused on women, who are someone’s girlfriends, wives, mothers, through 12 topics. Experts would be engaged for each subject, 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. The given topic’s content will be adapted to an ordinary woman without significantmedical terms and focused on real-life situations as an example.