Let’s not whisper, let’s speak loudly and openly about who we are, how we feel, and lend a hand to the others like us

Silvana Lesidrenska, Chair of HepActive Association Bulgaria and Member of Board of Liver Patients’ International. 

My name is Silvana and I’ve lived with Hepatitis B since I was a tiny cell. In 1982, the year that I was born, my mother was also carrying the virus, and she never thought she was infected with it. Because of reusable syringes, untested blood, and a lack of precautions, we became a part of global history by being among the 257 million chronically ill people that have been affected by this virus. Coincidentally, I was diagnosed at the age of 24 without being provided with reliable medical information and proper referrals for treatment. Doctors would tell me “In five years you will be dead” or “I do not want to be your dentist because you will infect me” or the falsely uplifting “The virus is not dangerous at all; you can live in harmony”. I was not advised to test my mother. After many wanderings, I came across an internet forum of patients who supported each other in the best way that one suffering soul can help another – with guidance from specialists, emotional support, and a non-judgmental attitude. The help I got through such a forum saved the lives of both me and my mom, who when she got to the right doctor, was diagnosed with advanced liver fibrosis, stage F3/F4.  Fortunately, the treatment helped both of us and we are healthy now. Altogether, with a now healed liver, I was gifted with my true purpose in life – to help those who are like me, who wander from countless doctors and websites while losing precious time because the system is broken. Looking back on the past years, I realize how much self-reflection hepatitis has allowed me to do- I started to take care of myself in a variety of ways in order to lead a healthy life, like practicing yoga, I saw what is truly important to me. 

In 2009, with another 8 patients, we created HepActive Association with the sole purpose to assist people living with viral hepatitis – with reliable information, screening for HBV and HCV, emotional support, and legal aid. For the last 7 years, I’ve been the chair of the board, and for me, this is the most meaningful part of my life. Along with the daily care we provide to patients with hepatitis B and C, we have contributed to  historical changes in Bulgaria – the creation of the first National program for prevention and control of viral hepatitis, the blood donation ordinance was updated and now donors are directly notified if they were infected with hepatitis, we fought four times in the Supreme Administrative Court to open the criteria for the treatment of hepatitis C, we started a dialogue to remove the liver biopsy as a mandatory procedure for hepatitis B treatment initiation. But all this would not have been possible without the patients who in 2009 and chose to be brave and unite around a cause.  

Every day I come across the stories of patients who are at a dead end, whose souls are hurt, who hide their diagnosis from their loved ones. I think – this can only be overcome with love and understanding. Maybe we will never reach the idealistic paradise in which everyone around the globe will be tested, treated, vaccinated and there will be enough services for people at risk, because resources will be never enough. But we, the patients, could elicit change by simply using our voices – which is something that doesn’t require money. We can change the perception we have of ourselves and we can encourage and empower others to do the same. Let’s not whisper, let’s speak loudly and openly about who we are, how we feel, and lend a hand to the others like us. And if you are a patient who feels hopeless, misunderstood, let me assure you: You are not alone – we are a part of 257 million people in this world that are desperate for the help, the compassion and the understanding that every human being deserves, no matter what. But the collective change could happen only if we start it from ourselves and pass it on. 

So, what good will you do today?  

Additional information for HepActive:

HepActive Association was established in 2009 by a group of patients and their relatives with the main goal to raise public awareness about hepatitis as a socially significant disease, as well as to provide assistance to anyone in need. The association offers free testing for hepatitis B and C, emotional and practical support for patients with hepatitis, including referral to a specialized treatment clinic and free legal aid in cases of violated rights. Silvana Lesidrenska has been part of HepActive since its inception and is currently chairing. As a patient with chronic hepatitis B who faces daily health system deficiencies, Silvana’s personal cause is to fight for equal and timely access to the latest medical care and treatment for every patient with viral hepatitis. She believes that every patient has the right to participate in decision-making related to his or her treatment and health in a supportive environment free of stigma and discrimination. She was born in 1982, a psychologist by education.