Why This Book Why Now?

photo of fabric pattern in the shape of the continent of Africa

This book focuses on the UK HIV epidemic, and within that reflects on the HIV experience of African communities through individual stories and reflections rather than HIV statistics.

This is the first book specifically to do that. This has been made possible as a result of five Black African women living with HIV and residing in the UK.

In this book, we have shared some of our experiences and the reflections of many more people like us, and, together with our allies, we hope the world never forgets what we went through, what we did and how we lived, fighting for our very survival as HIV and the stigma related to it threatened our lives.

Meaningful relationships & the HIV community

‘Relationships matter and are fundamental to building communities. I have met numerous people on my continuing HIV journey and built some very unlikely relationships.

I strongly feel there is something very special about the HIV community, not just at a national but also at global level.’

Winnie Ssanyu Sseruma

co-author

Raising HIV Awareness

‘One of my highlights when raising awareness for HIV was when I made a Red Awareness brooch for Prince Harry, and I pinned it on him.

Am I allowed to say more?

I did ask him to unbutton two buttons so I could pin the brooch, which was bigger than the soft pin. All he said was, ‘Please don’t stab me,’ and we all burst into laughter. He smelt so good. I could smell his aftershave all day!’

Charity Nyirenda

co-author, artist

Creating a vision to symbolise our journey

It was important to me that we created a bold and vibrant collage within the book.

Central to the book’s design is a tree, an oasis of peace symbolising strength, growth, stability, standing tall against all weathers.

For me, this is representative of how we stand together against the discrimination and stigma of living with HIV.

Charity Nyirenda

co-author, artist

‘The fabric with overlapping birds is called Ahenfei/Abusua/Ayawa in Ghana, meaning unity. In unity we stand together as one. The birds represent our families, community/allies and support around us, flocking together in waves. These symbolise The power, force and energy we all have within us. It brings constant change and flexibility, which we have all experienced when living with HIV.’

Charity Nyirenda

co-author, artist

Providing peer support

‘Looking back, even though I felt completely helpless at times, I would say to my younger self have faith in your own strength and resilience, as this is what will carry you through and you will be all right.

Whilst I feel achieving a higher level of education has been quite rewarding, given the challenges along the way, the most important achievements for me are those that have involved other people living with HIV.

There is nothing more valuable than watching someone I had the privilege of meeting in their most vulnerable circumstance thriving because of that interaction. That is a wonderful achievement and the most important one for me.’

Rebecca Mbewe

co-author

Being alive, living openly and fully

‘The highs I believe are that I am alive today and getting the best care from the NHS. A lot of people in the world do not have this privilege.

I was also empowered to be open about my HIV status, appeared as the cover girl on Positively Women magazine and Positive Nation – there was no going back.

I was interviewed by CNN for World AIDS Day. This was broadcast on repeat throughout the day. I have been in newspaper and magazine articles with my picture and my name.’

Memory Sachikonye

co-author

About HIV treatments & Stigma

Then there was also the stigma, myths and misconceptions about HIV, which sadly still persist today, some 40 years into the epidemic. We have certainly come a long way in terms of how treatments for HIV have developed, to a point where if someone adheres to their treatment – takes their treatment as advised and follows any restrictions, which are very few nowadays – and if they achieve and maintain an undetectable viral load, it means they cannot pass HIV onto their sexual partner or their unborn child. This is also known as U=U, Undetectable=Untransmittable.

Angelina Namiba

co-author

A Foundation For The Future

Our hope is that this project is a foundation that African communities can build on, to continue to document the journeys of the African diaspora, highlighting the impact we are making in other areas in the UK, rather than always focusing on our challenges.

Co-Authors