Iryna Zhychar: If patients are not fighting for their life and rights, they have no chances

Belarus has around two thousand patient at hemodialysis. Without transplantation of donor organs half of them will die within 5 years.

Hemodialysis is a colossal stress for heart and other organs and systems of human organism. Describing the influence of hemodialysis on human body, doctors compare it to a car driving through the body every day. That is why, obviously, transplantation is a way-out for such patients.

In this relation today Belarus faces a need in substantial information and educational campaign for preparing the society for a relatively new phenomenon – donation and transplantation.

Transplantation is twice as cheap as dialysis, so it is for the economic benefit of the country to develop this direction, too. By the way, official medicine in Russia has already come across contraction of companies, the business of which is built on dialysis. It is important for Belarus to take this experience of neighbors in consideration, so it is impossible to do without public control in this situation, too.

- Now people often perceive it as shock, whereas practice of donation should enter the minds of our people and our culture. Modern civilized person should understand that after their deaths they can continue living! – says Rastsislau Lauryniuk, the chief nonstaff transplant of the Brest region.

Apart from that, the doctor articulates a number of other problems that patients, who survived transplantation, are facing afterwards.

- The biggest problem for now is to organize social adaptation of these people, help them with employment, especially when they can and are ready to do something and help someone.

To introduce a system of high-quality social adaptation of such patients a social and educational institution “International center “Donation, Dialysis. Transplantation” was established in Brest in 2015. The center has everything for the successful and useful civic work: both an outstanding leader as well as the frame work of around one hundred people after transplantation, who have enormous ardor and motivation and don’t think of themselves as patients.

According to one of the initiators and founders of the center, a psychologist Tatsiana Thorava, Belarus also has a strong need of establishing corresponding seminars trainings for patients that are going through dialysis or went through transplantation. So in the future the whole alternative adaptation course for people with transplanted organs is to be worked out. All in all, about 2500 people all over Belarus are waiting for the help that can be formulated as the answer to the question “How to live in a principally new situation?”

We need to note that in the sphere of transplantation it is Brest and Brest region that are ahead of all country. However, Brest initiative of patients’ is not the first in Belarus: four years ago a similar community of oncological patients in Minsk was established by Iryna Zhychar, who is now heading her own social and educational establishment “Center for support of cancer patients “In name of life”.

Iryna has survived cancer twice herself and while fighting with the disease she started looking for people with similar problems – for those, who needed to get rid of loneliness and find themselves in a new life after the disease. Of course, such people soon found themselves, and it turned out that they are numerous.

Iryna shared her valuable organizational experience with the Brest patients, who are now only consolidating at the meeting that was organized in June with the help of Leanid Kalitsenia, the head of the civic union “Center for Social Innovation”.

Iryna went through a lot of things: establishment and registration of her community, adaptation, crisis, and a new adaptation. Conflicts within a group are challenges, which also need to be overcome.

- In result, life demonstrates that cancer is stronger than any conflicts and it makes us get united. It is good when a patient and a doctor fight together. But when patients are not fighting for their life and rights, they have no chances, - says Iryna Zhychar.

Today Iryna Zhychar and her center have a lot of good things to boast of: specialized meetings, round tables, theatre events with participation of artists who have cancer, master-classes on healthy lifestyles, excursions, and trips… Recently with the help of the “Center for Social Innovation” brochures with the rights and obligations of patients were published, which turned out to be in high demand. The nearest plans are to prepare a number of lectures of experts that doctors-oncologists would give to patients throughout the country.

- The Ministry of Health realizes that today we have a lot of things that the rest of the world offers cancer patients: oncological diet, phytotherapy, exercises, and yoga. However, the officials don’t know how to influence our situation so that to get all that for our country with the resources they have, - tells Iryna Zhychar.

As Leanid Kalitsenia said, if Belarusans were realizing similar initiatives more often, perhaps, we would be able to change the environment for the better. The example of the Brest initiative demonstrates such feeling of responsibility towards our patients and towards our work that is incredibly rare these days.

It is great that both the citizens of Minsk and Brest find mutual understanding and see the potential for working for the future together. The vision of the general perspective in this community is clear: from creating a place for discussing internal problems of different patient organizations to establishing a special council that would be able to solve global problems of high-quality patients’ social adaptation at a state level. We can only wish these bright minds to keep the lofty spirit and feeling of solidarity on their difficult path.