Today we are celebrating one year Stories of Hope! And we have achieved so much since our official launch on 18 July 2021, Mandela Day. Early last year, we started Stories of Hope with two Heroes, and since then our community has grown to eleven Heroes already!
You may remember that last year we highlighted the important role that Nelson Mandela fulfilled throughout his life for vulnerable people facing stigma of any kind.
Today, on Nelson’s birthday, we are proud to share a touching interview with our friend Adam Castillejo, and a true Ambassador of Hope for the global HIV community. We do hope that Adam will also be an inspiration to all of us!
Meanwhile we are very busy preparing for AIDS2022 as next week around this time we will be travelling to Montreal. We are so excited to connect to fellow activists, role models, and so many more inspiring people.
We also set ourselves a target, namely to capture and share at least one new Story of Hope on each conference day! To make this happen, we really need YOU!
So reach out to us and visit the Stories of Hope booth GVE013 at AIDS2022!
This weekend I was invited by Brandon O’Dell, director of the Amsterdam Dinner Foundation to celebrate 30 (!) years of support to the HIV community. And what a fantastic evening I had, together with the other 1,100 people supporting our common cause, to realise a world without HIV and AIDS.
Celebrating Life with people from different backgrounds is always very inspiring. I was happy to see so many Dutch celebrities that support us; Humberto Tan who also received the Amsterdam Dinner award in his fight against HIV stigma, Amsterdam’s Mayor Femke Halsema, my Stigmafighter ally Princess Mabel van Oranje who is a long time supporter of the HIV community, and many others.
During the event I also met our Ambassador of Hope Adam Castillejo, the London Patient, once again. We discussed a lot that evening and I am proud we will continue inspiring our HIV community. We have so many ideas and plans, I can’t wait to work on them together.
As this was a special edition, I was very honoured when asked to explain about what makes the Amsterdam Dinner Foundation so unique in a short video message directed at the audience. I was very pleased to highlight the Foundation’s role in connecting vulnerable people from the HIV community to people with a heart of gold willing to share whatever they can. I also brought a more serious message because, while we are doing ever better when it comes to HIV treatment, it is a shame that many people living with HIV and AIDS are still facing stigma. As HIV stigmafighter, this was my call for action: “Everybody present in this event, stand up against HIV stigma. We, people living with HIV, cannot win the battle without your help!” From what I saw, many people were touched by these words and I am glad my message is reaching more people. Just like for example my contribution to the Pozvibe podcast earlier this month.
In the end, the Amsterdam Dinner is also about making more possible ‘on the ground’. So, three important projects were highlighted. To make sure we continue our search for a HIV cure, to support the Aidsfonds in maintaining an emergency fund for Ukraine, and to support vulnerable children in Kenya who lost their parents due to AIDS. Together, the people present at the event raised a stunning 1.27M Euros. What a way to demonstrate my remark on the importance of connectness!
For me, a very touching part of the evening came when Roel Veltmeijer who is living with HIV for 5 years and chair of the board of the Amsterdam Dinner Foundation, shared his personal story how HIV stigma impacted his own life. This was followed by a heartbreaking video story of a young Ukranian girl born with HIV who also shared her many challenges since war broke out in Ukraine. All so emotional and really made me cry. So much work still to be done!
Luckily our spirits were lifted by the famous Eurovison songfestival winners of 2022, Kalush, and another winner, Duncan Laurence.
Amsterdam Dinner Foundation, I cannot thank you enough for the remarkable work you have done over the past 30 years. Do continue this great work for as long as it is needed and let us work together to realise our common dream to live in a World free of HIV and AIDS.
My lovely people, have I already told you how glad I am to be open about my status? I get to know more and more fabulous people in our HIV community wherever I go. And I love the way my HIV community keeps on growing. When we fight HIV stigma we need as many allies as possible.
In January this year I got in touch with a photographer from Dublin, Steven Doyle. He is not HIV positive, but he was a nurse in Romania during the height of AIDS epidemic in the 90’s where he worked with many children living with HIV and AIDS abandoned by their parents. Steven was taking care of them in hospitals and even adopted one of them, Nicu.
Eventually Nicu died at the age of 27. Ever since Steven’s work in Romania, he is vigorously fighting HIV stigma and discrimination through his activism and photography. His story moved me and we have so many things in common, see for example my story on HIV medication exchange for people living with HIV in Romania.
Inspired by Steven’s story I decided to join his project where he is collecting stories and portraits of people living with HIV all over the World. I consider Steven my newest HIV STIGMA family member.
So, in May Steven invited me and my husband for the photo exhibition in Dublin, Ireland. I was very excited and also curious to get to know the other HIV models. And I found that at least 3 of them are my EATG colleagues, what a small World!
In Ireland I was able to connect with new people like wonderful Gerry, who introduced me to the big HIV network in Ireland, for example HIV Ireland. One day he also showed us around in his family’s magical garden where he told us so many stories about edible and medicinal plants, what an experience! He showed us the beautiful Kildare Cathedral where I learned much about Saint Brigid of Kildare, a very important Irish Female Saint. Gerry is truly doing a lot for the HIV community in Ireland.
And then came the surprise invitation of Robbie and the Fabulous Drag Queen Veda Lady who are the hosts of the Poz vibe Podcast for people living with HIV, their friends, family and allies. There I also met Jordie, and my ally Steven was also part of the podcast. While all our stories are unique and inspiring, we are all connected by beating our common enemy “HIV STIGMA”. We shared many tears and laughter that afternoon. Overall, through our common experiences we realised that we are heading into the right direction and that our efforts are not in vain. Talking about HIV openly is definitely the right way to normalise HIV.
Yet, I would like to say one word of caution as, to me, the migrant HIV community is still not vocal enough, whether in Ireland or my own country the Netherlands. So I do hope my and other stories will keep on inspiring them to join us.
I would like to thank Steven for introducing me to my allies in Ireland and helping the HIV community to share our stories through our beautiful faces. Also hugs and kisses to Veda Lady and Robbie Lawlor for working so hard to make sure the positive voices of people living with HIV are being heard by the World. And Jordi, thank you so much for inspiring the young and queer world to living a fabulous positive life. Last but not least, I am thanking generous Gerry for his contribution to HIV Stigmafighter’s work in Burundi!
Let us keep up the good work, the world needs more people like us. Feel welcome to join our battle because HIV STIGMA MUST FALL!
We proudly announce that Stories of Hope will be part of the Global Village at AIDS2022 in Montreal, Canada, which will be held between 29 July and 02 August 2022.
So, nearly one year after our launch, succesfully collecting and showcasing the stories of 11 Heroes and distributing exclusive Stories of Hope postcards through various healthcare providers in the Netherlands, Stories of Hope will go global!
At the Global Village we will:
Showcase three original portraits of our Heroes of Hope, and share the Stories of Hope concept with the wider HIV/ AIDS community
Share sample health cards with Global Village visitors and discuss roll-out of more versions in other countries
Organise rapid story telling workshops to record more inspiring stories of talented People Living with HIV/ AIDS visiting the Global Village
Create new Stories of Hope to be launched during AIDS2022
If you will be visiting AIDS2022 and are interested to share your Story of Hope or want to learn more about how you can contribute to reducing HIV stigma in your country, get in touch!
Being open on social media and helping different individuals can be quite a challenge sometimes. Recently I was approached by a man for information about HIV diagnosis. He claimed to know his HIV status and apparently he was exposed during sex without condom. As he knew his status (negative), he ended up forcing this woman to go for a HIV test after they already had unprotected sex.
Why? He said that he suddenly became suspicious of her. When their test result came in, it confirmed that she was HIV positive while his result was negative. This made him very angry and in our conversation, he bluntly put the blame on her for allowing him to have sex without a condom. So I asked him, “isn’t this a joint decision to do that? Why should she be blamed?”
Since I don’t know her as he does not want to put her in touch with me, I decided to write a letter to her as there are many women and girls who go through this in many places. So, here is my letter to you, my Wonder woman!
My Wonder woman
How are you?
We don’t know each other but I know your story through your boyfriend. By the way, he is a coward! First I wanted to let you know that you are not alone going through this. Learning that you are HIV positive is a scary thing, especially when you are caught by surprise. You were not aware yet that you were joined by this tiny virus called HIV. I call it “tiny” because you can beat it.
I know it breaks your heart to trust someone and you end up being blamed and dumped because of this tiny virus. But let that man and this HIV virus be the losers!
I heard that he forced you to go with him for a test and that is how you learned about your status. I am sorry you have to go through this. Your boyfriend says that he already knew his status because he does regular checks up. Then why is he so angry at you? It was his choice not to protect himself without knowing your status. Why didn’t he use a condom or PrEP? And still he wants to blame you for being Positive while he got to stay negative? What is he complaining about? He is a such idiot!
My wonder woman, I can feel your pain. You may have no one to share your secret, you may feel darkness, scared and alone. If you happen to read my message, please come and talk to me. Don’t stay alone, because there are a lot of sisters who went through a lot and came out stronger than ever.
Wonder woman, get on medication as soon as possible. When you are on medication you will become undetectable, you cannot transmit your HIV through sex. You can continue to plan for your future. If you want you can become a mother. Your HIV is not here to stop you from chasing your dreams. Live healthy, give yourself a compliment everyday. Every little achievement in your life deserves a celebration. Continue to go out with your friends, don’t be afraid of sharing beers, laughs or hugs, HIV will not jump on them.
If you want to share your secret with someone, choose wisely with whom to share. Start with a person you trust most and see how it goes. If that person is your real friend, he or she will keep it safe and will help you in case of an emergency. And may also help you to become open about your status one day.
One more thing. Smile often, it helps to brighten your heart and spirit. I like to smile too, that is why I recommend it to you. Stigma around HIV and AIDS is still the biggest issue in our World but, once you embrace your HIV status and have a strong mind, you will fight together with others sisters and brothers in our HIV community.
Wonder Woman, don’t let HIV stand in your way! Continue to live positively, like many of us are already doing for ages . WE are strong and Powerful. I am sending my love and positive vibes to you, wherever you are in this World.
My lovely people, February is called by many Valentine’s month. It is considered a romantic month, and for me it is also called birthday month as it is my lovely husband’s birthday on Valentine’s day. This month we chose to celebrate his 51st birthday in Rome.
Why Rome? I grew up with in a strong catholic family with religious parents. In my youth I was a priest helper, I was part of a church dance group and I grew up with catholic values. I always believed Rome was the Holy City; As a child I did not know that the Vatican was actually a state in Rome where the Pope resided, I thought He lived in Rome and his church was called Vatican.
In 1990 Pope John Paul II visited my country Burundi. I kept very sweet memories of that and since I always fantasized of being in the Vatican one day, to see where the Pope lived. Later on, during high school we also learned so much about history and the important influence of the Roman empire and Christianity as one of the world religions with its seat in the Vatican.
But when I was told in 2003 that I was going to die because of my HIV, I thought that I would never be able to visit the Saint Peter Square in the Vatican or see the place where gladiators, like in the movie, would never give up until their last breath. So having overcome the hurdle of access to HIV medication, my WILL to visit Rome on day only increased. I really wanted to fulfill that childhood dream.
So when my husband asked me which city in Europe I wanted to visit, there was no doubt that this should be Rome. So finally, after these horrible covid times I said “darling, let’s go to Rome to celebrate your birthday. Carpe Diem!” He asked why Rome? I explained that I had been dreaming of this since I was a kid, to see where Pope lives and set my foot in the Vatican, and to tell HIV that my dreams can still come through!
And it did come true! We visited Rome from 10 to 15 February. First we visited the colosseum, an incredible structure, considering it is almost 2,000 years old! Only when you are there, you are able to realise what immense power these Roman emperors literally held. It is not difficult to also feel the pain and injustice done to the slaves that built it. The whole area around the Colosseum, on the Palatine hill and around the Forum, you start realising how sophisticated and hard working the common people and slaves were. Rome was certainly not built in one day, and surely not by the Romans themselves!
Then it was time for the massive and beautiful Saint Peter Basilica, the domain of the Pope. It is so impressive. We were lucky to visit the Vatican gardens with their three styles; the English, Italian and French gardens. After 12.00, once the tourists have left, this is where you will see the Pope meditate. The most touching story involved ‘my’ Pope John Paul II again, who I really kept in my memory since his visit to Burundi. We passed by a garden where he used to come daily to pray next to a statue of the Virgin Mary. Although there were many different chairs in that garden, he was not conformtable on any of them. So the gardener made a very simple seat out of a wooden log for him. And fromt that moment, when he sat in it, he felt the connection. He felt ‘grounded’, rooted to the earth and ever since it became his special seat. I was so happy to sit on that chair. It made me feel so unique!
Rome is beautiful and vibrant! It takes some time to really appreciate the city, but once you do, you see so many beautiful things. It is when you notice that each bridge over the Tiber river is special in its own way. For example, you will notice the Jazz bands playing on the Ponte Sisto on Sunday afternoons and see people taking time to enjoy life. And see me joining them, dancing, to become part of that amazing spontaneous atmosphere, ‘whipping’ others to make the whole bridge one giant open air Jazz festival!
Yes, I have seen with my own eyes that Rome was not built in one day… My acceptance of living with HIV also took what seemed millions of days to come to a point where I was able to enjoy the confidence I re-built myself. But in the end, my HIV did not become my limitation to give up on my dream to visit Rome.
So, despite Rome not having been built in one day, NEVER forget that it only takes one day, one short moment, to enjoy life to the fullest.
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:
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!
Share (my emotions)
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!
On Saturday 4 December 2021, I helped Inyambo STARS to organise a local event to celebrate World AIDS Day. This was a day to show their community why they are true talents, showing their fashion skills AND committed to helping their community, especially supporting vulnerable people living with HIV in Gihanga, Burundi.
Inyambo STARS, RBP+ ( Reseau Burundais des Personnes vivant avec le VIH) with indonongo.org support, organised a total of three activities. And as large gatherings were not allowed due to the COVID-19 pandemic, they really had to show their improvisation skills this time around!
The day started with a great Burundian tradition called Ibikorwa Rusangi, community work. All over the country, every Saturday morning from 8h00 the people of Burundi contribute collectively to keeping our community healthy and promoting good cross-cultural relations. They were joined by their parents, local representatives, shopkeepers and other community members.
Really, there is no way Inyambo STARS can perform their arts without maintaining good relations and giving back to their community. I know this gave them a lot of inspiration to stay connected and work together as one. What a great opportunity to connect the community of Gihanga to fighting HIV stigma in our country.
After Ibikorwa Rusangi, Inyambo STARS, a selection of people living with HIV and partners, marched together through Gihanga in solidarity with people living with HIV and to raise awareness on this year’s World AIDS Day theme: “End AIDS, end inequalities , end pandemics”. Did you know that in Gihanga there are 246 people living with HIV, 84 men and 162 women? Of them 29 are younger than 29 years, of which 8 boys and 21 girls.
Yes, normally Inyambo STARS would now have done a fashion show or catwalk, but I do believe this March together with people living with HIV did really help them to unify with the HIV community.
They closed the day by expressing solidarity and support to vulnerable people living with HIV. The cordinator of RBP+ reinforced the message to the community of the importance of staying on medication and going to the health centre for regular check-ups. She also called upon pregnant women to do a HIV test so they can detect any new HIV cases to prevent neonatal HIV.
Helping Inyanmbo STARS and their partners to support people living with HIV in Gihanga during World AIDS Day, inspires me a lot and gives me so much positive energy to continue making impact in my community of Gihanga and possibly in the whole of Burundi.
It’s world AIDS day and, although AIDS continues to kill people and people living with hiv/ AIDS continue to face inequalities, there is a growing number of stories of hope.
This week I met two more people cured of HIV. While they highlighted how they experienced love from others whilst battling cancer and living with hiv, they also received hate and judgement. Stigma is still a big issue. Yet, their stories fill us with hope; that one day we will end hiv and AIDS, and that we must begin our journey by ending stigma and inequalities based on gender, income and race.
While conveying their message of hope, I am also very proud to contribute to the fight against inequalities by sharing two new stories of hope today. I know that Anna and Perry will inspire you with their own stories about overcoming hiv stigma by using their talents.
My birthday month, November, had a great start by doing what I like most, giving my HIV activism a boost. Between 4-7 November I was in Istanbul for a face-to-face ‘Skills Training to Empower Patients’ (STEP-UP) and networking weekend organized by the European AIDS Treatment Group (EATG) Training Academy.
After more than a year of online training because of Covid 19, I got a chance to finally meet my fellow European and Asian HIV activists and advocates. Everyone was dying to meet and finally get to know each other more and share our experiences because in the end it is really about community voices. It was quite interesting to experience the difference between zoom meetings and ‘real’ talks together.
As we all came from different parts of Europe and Central Asia we had to speak different languages, so some were speaking English and others Russian. But in the end we all share the same goal and then language barriers can be overcome. While chatting with different people and listening to presentations, I realized that we all share what I call a “Bouquet of problems”; Stigma, discrimination and criminalization.
During the weekend I learnt so many new insights. For example, my friends from Greece and Georgia shared with us that among people using drugs, women are way more stigmatised than men. Or that in some countries mothers living with HIV are still criminalised when breastfeeding and that they are not receiving any support from the health system to obtain baby formula or do medical checks during their breastfeeding period.
Yet, all the new information led me to ask so many questions. For example, why are especially women still so vulnerable to attack and deliberate stigmatision? There are so many new developments and guidelines, for example on breastfeeding, there is U=U, etc. In 2021, women living with hiv should not be criminalised at all. I am telling you, no mother would wish to transmit HIV to her child on purpose!
It shocked me to hear that there are still 130 (!) countries where people living with HIV are injustly criminalised, and in 50 countries we can be prosecuted because they have outdated laws related to sexual, but also on spitting, biting and even breastfeeding. People, after 40 years of HIV/AIDS, instead of being stigmatised we must focus our fight on removing inequalities and to demand the right to access HIV treatment and receive good medical care.
Our training was epic, there was no taboo, we talked about many topics and received useful tools that we can use in our communities. It feels like I have known this group for such a long time as we shared so many laughs, jokes and fun. It made me wonder what more we could have achieved if we could have done all sessions face-to-face instead of via zoom. I gained so many friends, which is fantastic. These moments of togetherness bring back humanity to our lives.
By Sunday, we all went back home empowered with knowledge that we will share with our community and use to convince our decision-makers and politicians to DECRIMINALISE people living with HIV!
Thank you EATG for organising the STEP-UP training and making this such an inspiring weekend, we shall meet again my Activist Friends. Keep up the fight, we are on the winning side since we DARE to speak up about our bouquet of problems!