Be my messenger

Dear Santa,

I wanted to ask you a favour for this Christmas season. As a woman living with HIV for 17 years I am grateful to live. I look at the future positively. Only sometimes I fall back when I experience stigma with health care providers or when I hear that in some places pregnant women have no access to HIV medication for themselves and their yet to be born children.

It hurts to hear that in so many places there are still pregnant women who do not have access to life saving medication. We should no longer have children born with HIV. So last week when I organized a Meet & Greet at the pink statue of the Crying Woman here in Amersfoort, my purpose was to get an impression how people were touched by the message behind the statue and to hear their thoughts on issues such as access to medication for all, especially pregnant women.

The understanding of the people I met and their support for the issues I raised, especially fighting for universal HIV medication access for pregnant women, was overwhelming. So I asked people to help spread my messages. Some even wrote and shared their own messages:

I am very grateful for the support I received that day. It shows that people finally understand how hard it is to live without having access to medication and fear that your baby risks to be born with a preventable condition.

The Meet & Greet gave me a lot of courage to keep fighting in 2020. Dear Santa, when you give presents tonight, I want to ask you to include these messages to everyone .I know you can reach so many people in one night, including the decision-makers. Let’s see the positive change in 2020.

I wish everyone a merry Christmas and am positively looking forward to 2020.



The crying woman is in Amersfoort

Today, together with councillor Tigelaar, I unveiled the crying woman here in Amersfoort. It is such an honour to have her at the Lievevrouwekerkhof in the heart of lovely Amersfoort. Again, a great moment to share my story on the importance of fighting HIV stigma. The story continues. Where shall this beautiful statue travel next after a week in my hometown?



Unveiling the crying woman on World Aids Day 2019

Today, together with Dutch celebrity Angela Groothuizen, Mark Vermeulen the director of Aidsfonds, and 11-year-old Jacky, I unveiled the statue of a crying woman. She sheds one teardrop every 40 seconds. This symbolises the fact that every 40 seconds someone in the world dies of AIDS. It was a great honor to be part of this. These pictures speak for themselves:

Here you can read my full story in Dutch. The text is in Dutch, and the movie is in English. It was a memorable day. I will keep on fighting!



Stigma & World Aids Day 2019

Look at this young man, left to fight alone in this World. What do you think happen to him? I blame stigma. HIV stigma killed both his parents when he was 14. I feel sad every time I look at him.

HIV stigma, I am very angry at you! I will never forgive you. Of what you have done and continue to do to me and others.

Remember, whatever level of HIV education you have received, you are still at risk. Even those educated are still afraid of being judged: Many of us still do not want to be open about this terrible disease. When she was sick, my cousin’s answer was “I have got malaria”. That was her escape route.

Those not well educated yet, sometimes continue to uphold dangerous beliefs and practices. They think the disease can be ‘cured’, actually by putting other people at risk. They can make the problem bigger instead of solving it.

Sometimes I wish there would be a good peer education system. It helps the educated and non-educated to hear positive stories. It helps to understand, to share, and to change positively. I know the power of peers as I see it work here in the Netherlands.

I wish that there is no stigma. That in every corner of the world there a place where people meet and share. And where people can get access to their medication.

But the World is unfair, in many places in this World children still lose their parents. How can we end HIV/AIDS when people do not have access to education and treatment? As HIV stigmafighter, I dedicate my life to educate  people. I empower people living with HIV, especially the Young Generation.

During World Aids Day we honor the dead by fighting for the living.
I will fight for those deprived of chances and a right to a healthy life.

My hope is that one day in the midst of the darkness that is stigma, light will persist.


South Africa: Sharing my learning

I would like to share what I have learned during my recent two weeks in South Africa.

During the apartheid regime (1948-1994), there was so much hate between white and black people. Black people were oppressed and white privileged. There were many restricted areas where black people were not allowed to enter. Thanks to many freedom fighters such as Mandela apartheid ended in 1994. Sometimes you will still see reminders of the apartheid era on streets or in musea. It is when you enter the Townships, you will definitely get an idea of how underprivileged black communities were at that time, and are actually still struggling to date. 

When I was living in South Africa between 2004 and 2006, already it was not the same South Africa as during the apartheid regime. It was the Rainbow Nation, where you could see many Africans, also many from other African countries, living alongside South Africans. History taught us that South Africa has gained its freedom with the help of many other African Nations. 

Even then, the Rainbow Nation was not yet perfect and xenophobia was on the rise. I experienced this myself once when I was on my way home in one of the minibuses in Pretoria; I spoke English and the driver asked me to speak my mother tongue. He was hoping I would speak Zulu, but instead I spoke Kirundi (from Burundi), a Bantu languages just like Zulu. He was furious as he could not understand what I said, so asked in English what I just said. I told him that not all Africans have to understand each other mothers tongues but English can help us both. He was angry and he said ”No woman speaks to me like that. Get out of my bus”. None from the passengers stood up for me, they all kept quiet. He brutally stopped the bus, kicked me out in the middle of nowhere and drove off. From that time I did not feel safe anymore and, although I loved travelling with public transport, I stopped using these minibuses. 

Fast forward 2019, the South Africa as I knew it has changed even more and is now openly facing many challenges that have become more apparent, especially in the Townships. During my recent trip I heard about a lot of social problems such as child abuse, gender-based violence and poor access to health care. As a result many people reported incidences of rape, trauma and HIV/ AIDS, to name a few. 

The impact of these social issues become more visible to all. When I was walking on the streets in Stellenbosch I saw a message in front of a church reading “Women and Men are equal in God’s eyes. So, in whose name do men rape?” This made me realize that there is a big change. The fight to break stigma and taboos, and making sure that social problems are felt as a responsibility to solve by all, has to be done by all. So this church is taking the lead role in supporting people that are victims, and opening up the conversation on issues that were still hidden until now. 

So, whilst South Africa has now moved on since 1994, the end of apartheid, there are still many problems that remain untouched. They are now felt by many young people that are born after apartheid ended, born into a South Africa of hope. It is their voices, the children of people that fought to end apartheid, that must now be heard as well. We must support them in their struggle against new challenges whilst also making sure that apartheid can never take root again in South Africa. 

I want to give a voice to these young people of South Africa, so they understand I stand by them when fighting challenges around gender-based violence and access to quality healthcare, in the same way and with the same energy as we supported them in defeating apartheid. Whilst I was given some space to share my story on HIV and I felt this was well appreciated, I still felt discomfort at some people within my own choir to let me share my story on HIV stigma in selected communities in South Africa. 

Dealing with stigma, whether related to HIV/ AIDS, gender, age or disability, is a major social challenge in South Africa that must be addressed. Any attempt to break the taboo should be embraced instead of discouraged. I recognise I am not part of an anti-HIV stigma choir, yet I have also learned that by staying too much focused on apartheid we will miss out. To connect to this generation of people in the townships, we must also talk about key problems that reflect their daily reality! The world is rapidly changing and we must update our message to the world, telling the real life story of South African communities, especially in townships. Our message can be brought in many ways; Through this blog, by standing up in a community, or through the art of singing! 

And for US, Africans, we need to put our energy together and fight like our forefathers and parents did to fight for freedom and ensure all people shall be treated equally in equal circumstances. 

United as Africans stop violence amongst us, respect each other and share love! 



Mandela the inspirer

Yesterday was very special to me. Although I have lived in South Africa and visited Cape Town, I had never been to Robben Island. I finally got a chance to visit it with Duze Nomshikashika.

Since we were allowed to go without our choir outfit, I went with my HIV stigma fighter t-shirt. The former prison guard of Robben Island’s most famous prisoner, legend Nelson Mandela, was our personal guide. His name is Christo Brand.

In Mandela’s prison cell

When Christo told us the story about Mandela and other freedom fighters like Sobukwe and many more, I felt sad. But on the other hand thankful for the change I see in South Africa. He was a guide and eventually became a friend of Mandela. So he took us to Mandela’s former prison cell and explained how things were done back then. How people of colour were treated. Hearing him about Mandela’s life on Robben Island and how they became true friends despite the differences, I was proud to meet him.

Then Christo looked at me and he smiled. He took my hands and said ”I like your t-shirt, it is very beautiful”. I thanked him for that and then Christo shared his story of how Mandela fought HIV and AIDS. He said “Mandela’s son died of AIDS and while he died Mandela was sitting next to his bed, holding his hands”. After that, Mandela started a HIV foundation with the help of Bill Clinton.

I approached Christo with some more questions regarding HIV and AIDS during that time, the 1980’s. He said that he was taking care of the first inmate with HIV where no one wanted to help him. Christo went to search for information and after he talked with some medical people, he knew he was not going to be infected by touching the inmate. We talked more about stigma and how people, more than 20 years later, still lack information, especially in the townships. He said that even today in some places there is still no access to medication.

We ended our visit by having lunch with Christo and thanking him for this special tour. He gave everyone a hand, but when it was my turn, he refused to take my hand. He said ”You, I don’t want to give a hand. I want your hug! Hug me please… 30 years ago I would have gone to prison myself for hugging a coloured person but now that is not valid anymore”. I hugged him proudly, and thanked him to revived my spirit of fighting stigma. I promised to even speak louder for the ones that can’t be heard, and not to give up, no matter the hardship I have faced to speak out, even during this trip.

Hugs and friendships change the world

Thank you, Christo, for being such a humble person, for seeing the goodness in people beyond the colour of skin, and for being a friend of Mandela during his times of hardship. Both of you are a great inspiration for the new generation. God bless you! 

Makupula Youth Choir

Yesterday I visited Kayamnandi township where I met Makupula Youth Choir and was able to share my story with them. Watch this short video for an impression:

I was very happy to see how they listened attentively. Before I shared my story we had been singing a lot of South African songs without them yet being aware of my story. It was great the moment to show my other face as well which was not about music but about HIV and stigma.

The youth is our future. There is still a long way to beat stigma. I am happy I was able to once again share my positive story about how you can still live a healhty life and fulfill your dreams when living with HIV. Thank you Kayamnandi Youth choir. It was great to be with you!

Peace, Eliane

From Alexandra to Tswane

It has been an amazing journey full with great experiences the past few days. On the 15th we were invited as a choir to sing in a workshop organised by Palesa Africa in Alexandra Township. The Leader of the group, Aveline Tau, had a big surprise for us because she invited different artists to perform as well: Hip pop , R&B , a story teller of Alexandra Township, poetry, kiss Kiss dance (amapiano). They all perform for Us. Then we learned a new song. Aveline knows me from Facebook via an African Artists Network and she knows me as Stigma fighter, so she did not leave me behind and invited me as a speaker as well. When it was my time to shine with my HIV story, the artist community of Alexandra who saw me singing with Duze were very surprised to hear my story. I felt their joy and appreciation of sharing such important information as U=U. I explained the importance of doing HIV testing and remain faithful to take medication in order to reach the undetectable level. HIV has now become a chronic disease and we have medication, so we must make sure we take it, always. I told them that they should not jump to judgement when they see somebody with HIV because HIV does not define us. I thank them for being my listeners. It was amazing experience interacting with those artists and the rest of the community. I believe this is the best way of reducing the stigma.

Next day, the group went to a wildlife Park, but I had a mission! I went to visit Pretoria to refresh sweet memories.

So I started my Tswane journey at Menlyn Park, where I found Wimpy, a famous food chain in South Africa! This was an epic place during my pregnancy as my baby wanted me to eat only tuna sandwich from Wimpy. As I passed by, a waiter girl looked at my T-shirt and she smiled and asked “Are you an activist ?” I said, “yes I am”. She told me that she would love to do such work as it is a big problem here. I asked her why she wanted to join the fight, if maybe she knew someone with HIV. She told me that her close friend has HIV. I told her that she can support her friend by speaking out on behalf of her friend. She asked ”Are people not going to think that I am HIV positive too?” I told her that in any fight you should expect to win not to loose. I explained how I won my battle 16 years ago, I told her how important it is to keep trying even if people will try to push you. You must know what you want and keep finding ways to reach your goal. Then I sat down and had a cappuccino since they don’t sell tuna sandwiches anymore…

Then I visited another favourite of my husband and me, Baobab restaurant. We had many great lunches here after our shopping spree. Back then it was the only place where I could eat Brochette like they make them in Burundi. So I got in and spoke to the waiter, Jiji. He showed me around, how Baobab had been extended. Then I told him how special this place was for us. And I saw myself that it still is for many because during my lunch this couple got engaged during a birthday celebration. I congratulated them, and of course they ended up asking me about my T-shirt. So, here goes my story again. Jiji already asked me before and I told him, and much he did not know. I made a video to express the gratitude of what he has learned from me. Again, another way of making a difference.

On my way out I met Anthony from Ghana who greeted me in his language. I responded to him in English that I am not from Ghana but that I know it is a greeting. He followed me and asked “Hey lady, let me ask you something. Tell me, what does your message mean?” So I shared it once again and what stuck most was when I explained about U=U. All seem to be so surprised!

And now to my highlight which I almost missed as so much has changed in the area… But I found the sign to the Newland area. I could not wait to get there, our former home here in South Africa. The house where our son Rio spent his first months in this world. I finally saw some familiar shops on Ave Lane, and them I found it, Marigold. I boldly knocked on the same gate that I closed 13 years ago and a lady opened. I asked if I couls make some pictures of the house that I left so long ago now. She said yes please, though she warned me it has now become a community house and that they changed many things. Despite the changes, so many parts were still the same, it made me very emotional to see the place again. My mission was accomplished.

On my way back to Menlyn park for a taxi , I saw a street dancer. He inspired me for what he does for people passing by in their cars, despite no one really giving him anything. And yet he kept dancing, again and again. He did not give up and he said he will keep doing it everyday. I felt I still wanted to see more. So I made a video which can be watched on my Facebook page. To conclude, U=U opened his eyes as well. He promised 100% to go for HIV testing.

My final visit was Hatfield. A place which gave me comfort after my first visit seeing a HIV doctor and gave me life by supplying me with my first medication. I was supposed to meet Dr Mogotlane in this place, but unfortunately she had to take exams in Durban. So I went to visit the pharmacy which supplied medication for 3 years, WOOLFSON’S PHARMACY .I wanted to thank Dr Vally personally as he helped me a lot during that time. He was very discret and he never delayed my medication. Every 3 months he would get it ready before my departure to Luanda. Unfortunately he was not around that day, and his colleague did not believe me so he asked my surname. Guess what? I am still registered in their system. I like so much! They asked my contact details so he could get in touch one day

I finished my trip at Hatfield Plaza. A nice, small shopping mall. Luckily, it has not changed so much. But Hatfield Square, which used to be a nice collection of shops and bars has changed completely. They closed all shops and bars and build a lot of apartments. My special place of Amarula coffee and snails and garlic bread was gone.

My visit was useful with fun, education and refreshing memories. From Tswane I went back to Glenburne Lodge where I joined my choir to the Carnivore restaurent. What an amazing day!

Peace, Eliane

Regina Mundi helps my fight

Regina Mundi is latin for ‘Queen of the World’ and is amreference to the Virgin Mary. During the apartheid era the Regina Mundi church opened its doors to anti-apartheid groups and provided shelter to anti-apartheid activists. Because of the shelter it offered, Regina Mundi is often referred to as ‘The people’s church’ or ‘The people’s Cathedral’.

Yesterday, together with my choir DUZE Nomshikashika, I visited Soweto just to get to know its culture and important history in the apartheid struggle. We ended our afternoon at Regina Mundi with a rehersal with its choir. It was very beautiful and I was very touched singing in a famous Church with a local choir. All my youth memories from my Catholic church came back.

As I was wearing my HIV stigma fighter t-shirt an eldery man from the choir asked me “tell me, why are you wearing that t-shirt?” I answered him how important it is to fight the stigma around HIV and I bravely told him my story. He said “Wow, your story is very encouraging, you should share it in church. Many people, they stop believing as they think that God does not excist anymore”. He said that on Sunday he would introduce me to the Lady who does the announcements in the church.

I went back to our hostel, very excited to share my story in a Catolic Church in South Africa for the first time in my life! The same evening I got disappointing news that a few choir members were very worried the church would not welcome me to share such a story as it is not done in South Africa and that I would put shame on the choir’s name. I could not believe it, because I trusted everyone. First I went to my room and I cried very hard, then I called my husband just to be there for me.

After calming down, it was time to fight back! I went to the chief of our choir and I shared my feelings about this news with him. I told him that I felt stigmatized and that I wanted to fight back, not let it pass. Luckily he understood me very well. We sat together with the people that expressed their concern and talked about it. The solution we agreed on was to talk to the priest about my story and ask him permission to share it in the church. If he would say no, then I would deal with it and not blame the choir from stopping me to share my story.

This morning, the chief and I went to the priest and I was asked to explain what I wanted; “I want to give thanks to the great work God has done for me 16 years ago after my HIV diagnosis”. The Priest listened carefully, with eyes that showed understanding, and then he said “Normally we never give a special testimony during our service , but I will give you 5 minutes”. I was very grateful for this answer.

It seemed God spoke to the priest, as his preaching matched my story. It was about leprosy and how this led to ostracising sufferers in past times. Well, for me this was an incredible opening and when the Priest called me to join him, I felt a fire burning inside me. I knew my message would be well received in this church.

I began by referring to the Priest’s wise words and mentioned that in many parts of the world, these days HIV /AIDS is still considered as Leprocy a long time ago. I shared my story about how I came to South Africa from Angola to find treatment, how God answered my prayers of having children without HIV, and how God granted me many more days and years since I was 25 and now almost reaching 43. I reminded the church that God loves us all, even people with HIV/AIDS. I finished my story by telling that whoever has the disease, it is not a punishment. Continue treatment and continue to take good care for yourself. You are not alone. God never forsakes you!

I could read on peoples’ faces how my message was touching them. They could not wait for the end of the service to come and hug me. I immediately heared about one of the church’s choir members whose daughter has the same age as me and who also has HIV, and another lady said her young sister has HIV for 15 years . When I almost went into the bus to join my choir, a long term survivor came to hug me.

I am grateful for my choir to give me this opportunity and help me to find a way to share my story. Today taught me that it is important to keep on fighting and share the story of people that have to face stigma day in day out. Just like the brave people of South Africa fought apartheid, eventually HIV stigma will be beaten.

Peace, Eliane

South Africa here I come

I cannot wait for September to finish, so I can finally visit South Africa with a purpose after 13 years. Many African people may think why exactly I choose to go back? Well, I have a very positive reason. I believe in change, as I have changed the past few years by coming out of the closet and became a HIV stigma fighter.

I would like to reach those people that never got a chance to speak out about what stigma does to them and reach those who are still afraid to find out about their status. I want to share my living story with passion.

I have beautiful memories of South Africa. It has taken me so long to revisit the country that gave me my beautiful son and say thank you. Every year, on his birthday I get all those sweet memories back. Very often I think, what if I never managed to get to Pretoria for my HIV diagnosis and treatment? Was I going to last this long and reach my dreams? Well, thanks to my good health provider in South Africa, I did it! Dr.Mogotlane, you were my savior, you treated my diabetes, HIV and followed up on my pregnancy! Every day, I am still very thankful.

As I was still not open about my status, back then I never managed to meet any other person living with HIV. It was a taboo and no one did really dared to talk about it. This one of the reasons why I want to go back; Saying out loud and proud that being an HIV positive is not a curse, not a punishment from God and that it is not a crime. That you can still fulfil your dreams such as having children or living a healthy life. I want to share my story as it is a story of hope, encouragement and compassion.

So as HIV stigmafighter I want to show South Africans how grateful I am by sharing my stories during my performance with my Choir DUZE in the Townships. Living with HIV, I am proud to sing the solo of INCULAZ’IYABULALA (AIDS/HIV is killing us) and thereafter share my story with the people. This is how we breakdown stigma. In the end, people should know that with HIV you are still a human and all your talents and knowledge don’t go away.

Get ready South Africa, I am coming back with Positive vibes. Let’s sing, dance and get HIV education.

Peace, Eliane