Though the containment campaign has gained more national traction, many Ugandans still wrestle with the Sickle Cell disease and few know how to cope with it and live fulfilling lives –but Sharifu K Tusuubira has a few lessons to share in this article below.
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 of life in general and the way I live with sickle cell.
I was born in the 90’s when sickle cell, to 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 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 status. My mum named me Tusuubira, because she had hope that I will not die. 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” This always made me feel very bad.
I would over hear people say “oy’omwana mulwadde” meaning “that child is sick.” 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 terrible episodes. 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 recommended disciplinary action. My mum would always cry. Mostly, because of my health but also because her supervisors did not understand her situation.
I attended Nakasero Primary school, where in my P.7 we had a morning class of math starting at 7am. 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 yet 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 teachers why I skipped school.
When I joined high school, I always had yellow eyes, a distended belly and I was the smallest in class. A couple of times, some friends would ask why I looked the way I did. I didn’t really have any answer, even though I knew it was sickle cell but I just didn’t know how to make them understand.
I later joined boarding school and found it hard to cope, because I was sick for most of my first term. Fortunately, the school administration was very lenient to 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 young warriors. At this level, I learnt that it is very important to be a self-advocate; I started being open about my sickle cell to friends.
The most challenging times were national exam times, because of the extra exam stress. I would break down. 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 ace the exams and join Makerere University on government scholarship.
At Makerere University, I started looking at active advocacy. This followed a personal heart break. 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 any people to look up to 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. Later, I decided that it was time for me to get involved and change 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 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.
I was able to connect with someone named “sickle cell drive” on Facebook. I communicated for a while and later decided we should meet and see how to make a difference in our community.
At the meeting, there were four of us, sickle cell drive (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. We all shared experiences and our shared dream of making a difference in the community perception of sickle cell. After a series of meetings, it was decided that an organization “Sickle Cell Network Uganda” would be set up.
Only 20 years old at the time, I was about to finish 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 professor, Dr Jessica Nakavuma on a project I was working on. With her support, I was able to secure funding for my master’s on the same project. 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 Mariam Ndagire (renown musician and film director in Uganda) and the Late Prossy Nabirye (one of the great sickle cell advocates in Uganda).
This conference 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 event coordination.
In August 2013, when we became incorporated, I took on the leadership at Uganda American Sickle Cell Rescue Fund- Uganda, which has since rebranded to Uganda Sickle Cell Rescue Foundation.
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), and some of the most accomplished business persons and medical professionals.
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 notable businessmen like Dr Sikander Lalani (Chairman Roofings Groups), Mr Erostus Nsubuga (Chairman AGT group).
I have been at the helm of Uganda Sickle Cell Rescue Foundation (USCRF) for the past six years and 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 Ministry of Health. We have been able to extend direct support services to over 60,000 people across the country.
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 US Dept 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 United Kingdom. I also received the 2018 Clarke International University award for most outstanding community outreach.
While in the USA for the Mandela Fellowship, I met Ruby Goka an award-winning author from Ghana who has worked with me and the USCRF to have two books; a children’s picture book and young adult book for sickle cell awareness in Uganda.
The children’s book will 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.
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 the sickle cell challenges. Above all, it is our responsibility to become role models for all the young warriors.
Today, I am a PhD student 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.