When dreams come true

28 September 2025hivstigmafighter

Today I am sharing something close to my heart: the story of my son, Rio Mutoni.

When I was diagnosed with HIV, doctors told me I couldn’t have children. But I refused to accept that. So, thanks to antiretroviral treatment, I gave birth to Rio – HIV-negative, healthy, and full of life. He became my reason to fight against this virus and my proof that love and determination can overcome stigma and fear. I raised Rio with care and he grew up to become an amazing young man.

From the age of two, Rio was obsessed with trains. It started with Thomas the Tank Engine and quickly grew into a passion for real trains. He built train tracks out of domino stones and shoes, watched train movies on YouTube, and declared, “Mama, when I grow up, I will be a train driver”. Already in primary school at the age of five, when he had to mention his dream in a school book, he asked me to write down train driver. As we use public transport a lot, whenever we would use a train he would be very happy and paying a lot of attention to every move the trains would make. On his fifth birthday he wanted to visit the train museum and he could already experience a life size train simulation. His whole life he dedicated his passion for trains. His dream never wavered.

As parents we supported him in every way: train simulators, cameras for trainspotting, trips to train museums. His knowledge amazed us. At age nine, he navigated the London Underground better than most adults. And finally, at 19, after two years of vocational training, Rio graduated in July and was hired immediately by the National Railway as a professional train driver. He started driving trains on the first of September, and on the 25^th he received his formal course diploma. Of course we were there to celebrate this precious moment with him

His dream came true and we are so proud to have supported him to realise this since a young age.

To parents: learn to understand your child at an early age and support their dreams, not your expectations. Let them be who they are, not who you want them to be. Every child is born unique. Realising their happiness and dreams should be our priority.

To mothers living with HIV: never doubt your strength. You know the connection you had with your baby inside your womb, that love will continue to grow and will motivate you to support your baby. Our love is powerful. Our children are brilliant. We are proudly HIV-positive moms and we thrive.

Rio was born after my diagnosis. I am glad we have been able to do this for our son Rio, and the results certainly paid off. In return for supporting him, he helped me win my battle with HIV. And now, he’s driving trains across the Netherlands, living his dream. I couldn’t be prouder.

Rio, congratulations on realising your dream to become a train driver. You are proof that love and belief in yourself can move mountains.

Peace,

Eliane

Women of Hope accelerating action

8 March 20258 March 2025hivstigmafighter

Today we are celebrating International Women’s Day with a very interesting theme: ”Accelerate Action”.

Worldwide, strong women are working hard to ensure their fundamental needs and rights are being met in their communities. Accelerating action is about their fight to remove systemic barriers and inequalities that prevent them from claiming their fundamental rights. They are united in their aim for women and girls to thrive and exercise their rights without discrimination or disadvantage. And they know it is essential to work with women from marginalized communities, including indigenous people, sex workers, and transgender people.

I am extremely proud to present three (!) remarkable women from different parts of the world who all in their unique ways contribute to empowering women and girls in their communities to improve access to HIV services and fight against HIV stigma. They show us that there are so many ways we can contribute to empowering women, whether through research, journalism, awareness raising or teaching. Let’s meet our three new Heroes of Hope!

Maahi, a transwoman living with HIV from Pakistan, is the founder of the first trans-led network of People Living with HIV in Pakistan, a brilliant teacher at a transgender school and a global advocate for the rights and well-being of transgender people living with HIV.

Claudette is an indigenous woman from the Kehewin Cree Nation in Alberta, Canada. During her 30 years of living with HIV, through her work as a wisdom speaker on HIV and indigenous-focused research, she has grown into a leader in HIV action amongst indigenous women in Canada.

Harriet experienced the devastating impact of HIV and AIDS in the early 1990’s while supporting people living with HIV in Germany. Today, her lived experiences and skills as a journalist and sexologist strengthen her in her fight for the rights of sex workers.

Need I say more? All of our three icons work with so much compassion within their communities, sharing their experiences and efforts at the global stage to inspire all of us to accelerate much needed action to positively impact the lives of women and girls affected by the global HIV epidemic.

I am very glad to call them Heroes of Hope who truly contribute immensely to this year’s theme of accelerating action for women and girls. Let’s support local HIV action to continue bringing positive changes to our HIV communities!

Click on the images above to read their individual Stories or find them and other Heroes of Hope here!

Happy International Women’s Day! Peace,

Eliane

THRIVE

28 July 202318 August 2023hivstigmafighter

Hello my lovely people. Some of us are always counting their age, forgetting to do the things that make them happy. Remember, there is no such thing as putting your life on hold, because we are all ageing, every day!

This may sound weird, but I am always looking forward to ageing. When you cherish your dreams and love your life, ageing should not be your problem. As long as you are happy with yourself! Look at Eric the dragking, never giving a damn about age at all. Who knew I would be the first Dragking to be open about thriving with HIV?

Of course, for many of us living with HIV, it is quite a journey to get to this comfortable place that we all need to live and age healthily. Knowing first-hand how difficult it is and how many barriers we need to break, I have always been very committed as an activist member of the HIV community to share my personal experiences to change my lifestyle to improve my health-related quality of life.

Yes, there are many discussions and workshops on this topic, but how many of us really work together with people living and ageing with HIV instead of for them? So being always full of ideas as an HIV activist and entrepreneur, you may remember that last year I gave a performance called five ways to THRIVE. Well, sending the message through a performance or workshop is not enough!

What if we ask the HIV community directly to share their dreams, what they do to regain trust, and to share their journeys towards staying healthy while ageing with HIV?

Today I would like to share with you that we have indeed started to engage the HIV community to co-design community tools to express our challenges, and share our dreams and ideas to age healthily!

I am so blessed to get a lot of support from friends in the worldwide HIV community to think along, THRIVE is very much alive!

Through THRIVE we, as creative members of the HIV community, want to keep developing useful concepts and share our experiences. But we cannot do this alone and we will need support from our HIV allies to work with us to THRIVE while ageing healthily with HIV.

So, are you curious how you can engage with us? Get in touch and let’s THRIVE together!

Peace,

Eliane

FIVE ways to THRIVE

28 January 20228 March 2025hivstigmafighter

This month I had the opportunity to participate in the ‘Stories from HIV Long-Term Thrivers’ forum where I gave a spoken word performance alongside an amazing and inspiring panel. The forum was organized by ViiV healthcare.

How did I give this spoken word performance? I decided to share my 5 ways to thrive! Even today, to many people HIV is still seen as a disease to be ashamed of, they consider it as a big challenge while actually you can live a perfectly happy and healthy life. Here are my 5 ways to thrive for those who missed my performance:

Trust (again)

In 2003, when a doctor told me to buy my coffin when I was diagnosed with HIV and sent me away desperate, without a prescription, I spent a few hours thinking only about my death. I lost all confidence to live. Instead of looking for help, I started preparing my funeral. Hope started glowing when my husband brought me to another hospital for sound advice and to get my HIV treatment started. When I held my first pills in my hand, I rejoiced in taking them because I firmly believed they were going to save my life. Only after regaining trust in myself, I was able to work on my next step…

Move (my body)

My new reality made me even more aware of the importance to keep myself in shape and healthy. But what what get me going? In 2003, I wore a beautiful sky blue wedding dress and I set myself as a goal to wear it again at my 20th wedding anniversary next year. So, I decided to walk at least 10 km every day to keep me in shape and make sure for me wedding dress to fit me again. Another really important driver was for me to reduce the number of pills I am taking as I also need to take care of my diabetes. So as a huge added benefit of my daily walks I was also able to reduce 4 pills. And my weight? Well, I lost 8 kg so far, just a tiny bit to go. I like my healthy new me!

You all know by now that I came out of the closet with a big bang! As a campaign poster girl, with my message posted all over Amsterdam. After staying with my secret for more than 10 years, sharing my story with the world was a huge relief for me and made me even stronger and more courageous. It was also a great motivator to help more people in the HIV community, for example by peer counselling and support people living with HIV on emotional well being. It also motivated me to learn ever more about HIV, related stigma and existing inequalities in the world. Last but not least, I also launched an initiative called Stories of Hope to show the diversity and talents of the HIV community worldwide.

Perform (my arts)

My greatest passion has always been to be on the stage. Since very early on in my life, I liked entertaining people. And I do so in many different ways, as a poet, through traditional Burundian dance or playing my indonongo… While I am lucky to consider my passion as my job, my key message to all of you is to work out routines, find hobbies or simply try to enjoy your job and all other great things in life. Creating and maintaining a diverse lifestyle is probably really my biggest secret to staying healthy. So, despite having gone through so much in my life, I am confidently looking forward to growing old.

Dream (my desires)

Unfortunately, in Africa people living with HIV/ AIDS are still dying. My nephew Kevin lost both his parents because of AIDS within 8 days in the year 2015. During the forum I shared my wish for a world where children like Kevin will not lose their parents anymore, where they can access health services so they can get tested and treated, and where they can grow old in good health. And right now, for Kevin I wish he can be supported to grow up in a community where he will not be stigmatised.

Yes it is possible to thrive whilst living with HIV. I, and many others in the HIV community, am an example of that. I am always proud to share my little secrets to growing old while enjoying my life with HIV!