My name is Lilian Yaya. I’m from Moboro, South Sudan. I was born in 1971. I’m HIV positive. Life was okay for me until 1997. I was feeling a little bit sick and I went to see a doctor. I was in Uganda at the time. The doctor ran a test and he came back to me. His face was long and I could see he was nervous. I was uneasy and I repeatedly asked the doctor to tell me what was going on. After a long sigh, he whispered to me: I’m sorry my dear you know in life unexpected do happen, then I interrupted him and asked, “Am I HIV positive?” He was caught off guard and at this point, he got no choice but to say “Yes.” My mind went blank and I became semiconscious.
To confirm the exact date, it was on 5th November 1997, when I learned of my HIV status that I was HIV positive. I swept it under the carpet and moved on with my life convincing myself that it was unreal and that all was okay. After all, there were no immediate HIV medicines at the time and I was only treated with antibiotics. Not until 1999 that I developed a liver problem that almost took my life and I had to seek treatment time and again.
In 2000 my life completely changed when I started taking ARVS for the very first time. The liver disease I had gradually healed and I recovered from it a few months later. That same year I decided to move back to my home country South Sudan from Uganda. I couldn’t stay in Uganda permanently because life in the refugee camp became hard and we heard of some good life in South Sudan as compared. So, I chose to go for the lesser of two evils.
In South Sudan getting ARVs was very difficult and I was therefore forced to travel all the way from South Sudan to Uganda to receive the ARTs regimen. From 2000-2005, I would travel back and forth to get my medicines. In other years that followed I would order them which were sometimes delayed coming to me. It was not an easy experience but I was fighting for my life.
The health system gradually improved in South Sudan. In 2013 I started receiving my ARVs from Rumbek State Hospital previously known as CCM. In 2016 UNMIS took me for training with other three people who are also HIV positive. After the training, we were given certificates.
Work History
I started to work with SNEP+. Then from here, I was transferred to NEPO. And from NEPO to ICAP. From ICAP to Intrahealth and I have been working with Yo’ Care South Sudan as a Peer Navigator (P.N) since October 2021 to date.
Benefits of ARVs
After taking ARVs I felt well and I immediately set up a business in a hotel here in Rumbek. This business enabled me to pay school fees for my children. My firstborn has completed University and other children, twins (two boys) are now in S. 6 and my last born is in S.2. You see the goodness of taking medicines is that you are able to support your family. Up to now, I’m feeling strong and my health is good.
Unfortunately, my husband who had long been on ARVs died in 2019 but with my business and the support, I get from organizations I had continued and will continue to support my children.Advice The reason why I work with organizations like Yo’ Care South Sudan is to help others who are like me so that they can take their medicines well and educate or bring up their children like I have done and will continue to do with my children.