The journey of HOPE from Wandegeya to America — Sharifu Tusuubira
Hope is priceless, and I hold it dearly in the special chambers of my heart, body, and soul. I think that is why my beloved mother named me Tusuubira, which can flatly be translated as “We hope”. It is this name that tells the story of my life. I was born in Wandegeya a city suburb of Kampala, alongside the biggest slum at the time “Katanga.” I have very fond memories of these places because they have played a vital role in shaping my perception towards life in general and above all, the way I live with sickle cell.
I was born in the ’90s when sickle cell for many was a death sentence. Sickle cell then, as it is the case in some places now, was so unknown and it was associated with so many myths and beliefs. Before coming into this world, my parents had a wonderful love life, but everything changed with my arrival.
A couple of months after my birth, my parents separated and I have always guessed it had something to do with my sickle cell. My mum named me Tusuubira, because she had hope that I will not die. In spite of all that everyone was telling her, she always hoped that I will be different, and she always held onto that hope.
As a child growing up, the Mulago sickle cell clinic was only 1.6 km from home. Often my mother would carry me on her back, along Hajj Kasule road or via Katanga to the clinic when I was sick. My mother is a police officer, so we lived in Wandegeya police barracks, where like all other youngsters, I really loved to play. I would wake up every day and just run around or play soccer or duulu (it’s a game we played by shooting seeds into a hole, but with our fingers). However, I would always feel pain after playing. On some occasions, I would be playing soccer, and then all of a sudden I get pains in my chest or legs. I would be carried home. Situations like these would get people around us to say so many things about my health.
In one instance, I had gone out to play and other kids were like “Temuzanya naye mulwadde” which literally means “do not play with him, he’s sick” or “he cannot play such and such games he is sick.” This always made me feel very bad. I would overhear people or say “oy’omwana mulwadde” meaning “that child is sick” as I walked by. Because kids didn’t want to play with me, I would spend most of the time in Katanga slum, where kids didn’t know about my health issues and thus wouldn’t mind playing with me.
As a child, I would get into terrible episodes where I would cry the whole night often asking my mum to cut off the limbs that were causing me unbearable pain. I would always ask, why am I like this? Why is it only me who gets this pain? I don’t remember ever getting an answer! This situation was very hard on my mother because her supervisors would never understand why she was disappearing from duty. At one time, they even charged her or mandated her to disciplinary action. My mum would always cry. Mostly because of my health but also because her supervisors did not understand the situation in addition to what was said in the neighborhood.
I attended Nakasero Primary school, wherein my P.7 we had a class of morning math starting at 7 am. I would have to walk from Wandegeya to school very early in the morning; most times I would feel pain in my cheekbones due to the morning coldness even though I would be wearing warm clothes. Sometimes my feet would hurt, especially in the rainy season. I would not attend school but my mum would take the initiative to explain to the teachers why I had been away.
When I joined high school, I always had yellow eyes, distended belly and I was the smallest in class. A couple of times, I would have some friends asking me why I looked the way I did. I didn’t really have an answer, even though I knew it was sickle cell but I just didn’t know how to make them understand it. I later joined boarding school, something that was very hard to cope with, because I was sick for most of the time during my first term. Fortunately, the school administration was very lenient with me; they would let my mum visit every two weeks even though we had a one visitation rule. The school nurse was also very helpful. She was caring and compassionate. I am very happy that my former school nurse Hajjat, now works in the sickle cell children ward at Mulago hospital where she has continued to care for many more young warriors. At this level, I learned that it is very important to be a self-advocate; I started being open about having sickle cell to friends.
The most challenging times were national exam times, because of the extra exam stress. I would break down and get into episodes. In A-Level especially Form 6, I developed chronic back pain from all the reading and sleepless nights. However, at this time I had built a tribe of friends who were very supportive and understood my condition. A month to the national exams, I was admitted in Mulago for almost 3 weeks; I thank Allah that I was able to pass the exams and join Makerere University on a government scholarship.
At Makerere University, I had my turning point into considering engagement into active advocacy. This followed a personal heartbreak moment where a lady I was in love with, told me she couldn’t be with me because of sickle cell. This was draining emotionally, I felt like I had no place in the world. This time was very challenging because I didn’t have many people to look up who could help me figure out how to get over this. I did not know any other sickle cell person who I could engage with. After a brief period of feeling low, I decided that it was time for me to get involved and change the status quo of how sickle cell was viewed.
I was now at University, emotionally things were not going well, but professionally I had a similar challenge. I had so many ideas about what I could do after, but still, I did not have any mentors to look up to. This was a challenge I had throughout as a young boy growing up with sickle cell. I did not have people with sickle cell to serve as my mentors. I did not have people to give me that feeling that with my sickle cell I could still make it in life. I decided to seek out people I could relate with, and this was through professional connections: something that I hoped could help me get where I wanted to be. I hoped that I could be that mentor for other young people growing with sickle cell in Uganda.
After a couple of weeks, I was able to connect to someone named “sickle cell drive” on Facebook. I communicated for a while and later decided we should meet and see how to strategize to make a difference in our community. At the meeting, four of us, Sickle Cell Drive Uganda (real name Ashiraf Ssebandeke, now Executive Director of Action against Sickle Cell), Evelyn Mwesigwa (now working with the Sickle Cell Program at Ministry of Health), Leilah Batanda, Salim Ssemindi and myself. At the meeting, we all shared our experiences and our shared dream of making a difference regarding the community’s perception towards sickle cell. After a series of meetings, it was decided that an organization “Sickle Cell Network Uganda” would be set up.
Only 20 at the time, I was in the process of finishing my Bachelor’s degree at Makerere University. I wanted to proceed to graduate school but my mum had no money. I talked to one of my Professors, Dr. Jesica Nakavuma from a project I was working on. With her support, I was able to secure funding for my master’s study from the project. It was a big blessing because I enrolled even before my undergraduate graduation. When I graduated at 21 years of age, I was already sitting exams for my 1st semester of master’s class.
Around the same time, Uganda American Sickle Cell Rescue Fund a USA based organization headed by then Captain Lukiah Mulumba was organizing the 1st Sickle Cell Conference at Hotel Africana. I had reached out to her online and enlisted as a volunteer for the first conference. Our team involved persons like the legendary Mariam Ndagire (renown musician and film director in Uganda), the Late Prossy Nabirye (one of the great sickle cell advocates in Uganda) among others. This conference which was held in July 2013 marked the start of a journey as a sickle cell advocate. This event collected more than 3500 people mostly persons with sickle cell and their families. When the idea to have a local sickle cell foundation was born, I was asked to volunteer as the secretary after taking a central role in the event coordination.
In August 2013, when we became incorporated, I took on the leadership at Uganda American Sickle Cell Rescue Fund- Uganda which has now since rebranded to Uganda Sickle Cell Rescue Foundation. Only 22 years of age, I had no previous management experience but only my passion and dream to make a difference in the lives of people living with sickle cell like myself. I was blessed to have a very supportive Board of Directors; chaired by Dr. Bulaimu Muwanga Kibirige (Chairman BMK Group of Companies), comprising some of the most accomplished business persons and medical professionals in Uganda. These people played a key role in shaping my understanding of organizational management. One of my directors the late Dr. Lawrence Kaggwa who had been in senior management at the Mulago National Referral Hospital and Ministry of Health -Uganda became my go-to person for most of my learning needs. My board has since grown to include other notable businessmen like Dr. Sikander Lalani (Chairman Roofings Groups), Mr. Erostus Nsubuga (Chairman AGT group). The organization has also grown to become one of the largest sickle cell nonprofits in East Africa.
I have been at the helm of Uganda Sickle Cell Rescue Foundation (USCRF) for the past six years, where I have been able to spear-head sickle cell awareness initiatives across the country and the region. I am happy that my leadership is associated with several innovations particularly the community sickle cell screening where people can take a sickle cell test in their locality and receive results instantly. This is a program that has now been adopted by the Uganda Ministry of Health. Under my leadership, we have been able to extend direct support services to over 60,000 people across the country. However, I know that the impact USCRF has achieved would not have been possible without the support from the Board and benevolent sponsors. They believed and trusted me to steer this wonderful organization.
Through my work, I have been able to receive numerous honors and awards; in 2017 I was selected for the prestigious Mandela Washington Fellowship a program run by the United States Department of State, where top young leaders are selected from across Africa for a professional development experience in the USA. In 2018, I was selected for the Telemachus Mentorship, under the Global Thinkers Forum in the United Kingdom. I also received the 2018 Clarke International University award for most outstanding community outreach.
In the USA for the Mandela Fellowship, I met Ruby Goka an award-winning author from Ghana who has worked with me to have two books we are at fundraising for publication stage; a children’s picture book and young adult book for sickle cell awareness in Uganda. The children’s book is meant to be given out to children at sickle cell centers to help them understand the condition while the young adult book is meant to be given out in schools to help students understand this condition. I also met with Donna McCurry a sickle cell nurse practitioner, and she has since grown to become a very close friend and colleague. My interactions with her have been key in helping me understand the value of home care management in sickle cell care and I spent most of the past two years developing programming around this theme.
Looking back, I have come to understand that it is very important for anybody living with sickle cell especially in Africa to dream big and challenge the narrative. It is important for young people to become proactive and take-charge championing innovate solutions to sickle cell challenges. Above all, it is our responsibility to become role models for all the young warriors across the globe.
Today, I am PhD student at one of the best schools in ecology and evolutionary biology (University of Kansas) where I hope to specialize in population genetics. In what should be one of the most romantic phases in my life, I am married to my dear wife Sophia, and together we have two beautiful children.
My name is Tusuubira, given to me by mum because she wanted to inspire hope in herself and inspire hope in me as well. This is my life cause, to inspire hope among young people living with sickle cell from poor backgrounds like myself and all those from all walks of life, that we can still make a difference. The limitations are only in our minds.
