YALI Voices Podcast: Sharifu Tusuubira champions the cause of those living with sickle cell disease

Sharifu Kiragga Tusuubira’s name means “we hope,” which is exactly what he brings to communities across Uganda in his efforts to reduce the stigma regarding sickle cell disease. Sharifu believes awareness is key to making their society more inclusive and providing better care for those affected.

As the executive director of the Uganda Sickle Cell Rescue Foundation, Sharifu understands the challenges and stigma surrounding the disease from firsthand experience, having been born with sickle cell and having faced discrimination from family and peers throughout his life.

People in white shirts handing out medications to large crowd (Courtesy of Sharifu Tusuubira)
Sharifu Tusuubira hands out basic medication to parents and caregivers of children with sickle cell disease. (Courtesy photo)

His organization’s main objective is to better educate the population and change the misconceptions that perpetuate the mistreatment of sickle cell patients. By providing psychological services, engaging in family empowerment projects and advocating throughout the country, Sharifu is helping reshape the way Ugandan society acknowledges and cares for individuals with sickle cell disease.

Partnerships have been essential for his organization’s groundbreaking impact. Sharifu has also been able to network with other organizations working in sickle cell advocacy in other African countries through the YALI Network.

He encourages other entrepreneurs to start immediately when they have an idea of how to make a positive difference in their community: “If you’re passionate about anything, just start up. Just start, even if you’re one person; along the way you’ll build and be able to grow it. You just have to start … Do not wait for anything. Just start.”

Listen below for more on advocacy as a means of social inclusion and how to make an impact on a health issue affecting your community.

U.S. DEPARTMENT OF STATE

YALI Voices Podcast: Sharifu Kiragga Tusuubira

Transcript

SHARIFU KIRAGGA TUSUUBIRA: People would rather keep quiet than avoid people shunning them, avoiding them. So inclusion — we’re trying to achieve a point in time whereby we can talk about sickle cell to the extent that people feel comfortable.

My name is Sharifu Kiragga Tusuubira. It means “we hope.”

[MUSIC PLAYING]

♪ Yes we can ♪ ♪ Sure we can ♪ ♪ Change the world ♪

VOICEOVER: Welcome to the YALI Voices podcast, your home for sharing the best stories from the Young African Leaders Initiative Network. Be sure to subscribe to the YALI Voices podcast and visit yali.state.gov to stay up to date on all things YALI.

YALI Mandela Washington Fellow Sharifu Tusuubira is indeed hopeful. As executive director of the Uganda Sickle Cell Rescue Foundation, he has made promoting awareness and communicating effectively about the disease one of his primary ambitions in life. Education, credible information and exposure are key.

Born with the disease, he knows firsthand the pain that not only comes with living with sickle cell, but also how the misperceptions, rumors and stigmatization from others were obstacles in his journey. For Sharifu and others like him, the obstacles often start at home.

TUSUUBIRA: Okay, so I was born with sickle cell disease. So being born with sickle cell, I think my mother probably had no idea that it was sickle cell. But at about one year and a half, she found out that I had sickle cell. So at that point my dad divorced her because he knew that the baby has sickle cell and probably he doesn’t want to be with her because she’ll give birth to sick kids, because probably I was getting sick often. It’s so common to find people who have sickle cell are frequently ill. So that’s how my journey with sickle cell started. So growing up I would see her cry most of the time. I don’t know why she used to cry. I never asked, but I would see her cry most of the time, but I think it could have been because I was either ill and she was worried I was going to die. In most of the cases while I was growing up, you’d go out to play with kids and they’re like, “No.” They’d say — I don’t know if I can speak my local dialect, but — can I speak in the local dialect and translate it into English? So they would say, “Temuzanya naye mulwadde!” Like, “Do not play with him; he’s sick.” Or, “He cannot play such; he’s sick.” So, in a way, as a child you feel left out when you come to play with friends and they can’t play with you because you’re sick, and — so that’s how the journey with sickle cell had been for me as a child growing up. In high school, at some point, for one of the school who will not want to share utensils with me just because probably I had sickle cell. But it’s a fact that they didn’t know — there’s a belief that sickle cell is contagious, so no one would want to share a cup or a bottle of water with you, or anything to — or something edible — they’ll not want to do that because they would worry that probably you’re going to make them sick as well because you’re always sick. So when I got to university, I had this very nice lady I liked and, I mean, no one knew I had sickle cell because I had not fallen sick. So when I fell sick and — I mean, when I fell sick several know that Sharifu is sick; he’s in hospital. So I came back, and they’re like, “What’s wrong?” I’m like, “I have sickle cell, so it’s often normal that we get sick and get hospitalized.” So our relationship ended there. She’s like, “No, you know what, I can’t continue with you. You have sickle cell. It’s not something I’ve seen in my life and want to be associated with.” And that was my turning point to probably engage in sickle cell advocacy.

[MUSICAL INTERLUDE]

TUSUUBIRA: So sickle cell per se is a genetic blood disorder. I mean, it’s a blood disease that is inherited when two people — the mother and the father — who are carriers of this gene come together and give birth to a child with sickle cell. So, scientifically speaking, every pregnancy will have a 1 in 4 chances of being a child with either sickle cell, that is “SS,” or trait, that is “AS,” or normal, that is “AA.”

There were times of being in pain, actually. And the easiest thing that you could think of would be probably can you get a knife and I just cut off this hand, or I cut off this leg, because probably the pain is so much. What happens in sickle cell when the — why we call it sickle cell is the fact that it affects the red blood cells. So when the red blood cells are affected they’re not the normal crescent or doughnut-like cells that they should be, but they are moon-like — they are like the crescent moon. So being like the crescent moon, they can easily clog, or hold together, and when they hold together they block blood vessels and this causes pain — very excruciating pain. I mean, it causes a lot of pain. On top of pain, it causes complication like organ failure. It causes complications like physical disability because you can’t use a body part. The part has been deprived of oxygen, so the part has died off. So those are some of the things you find. So if you combine the pain that you have already — because being in pain you have this feeling that no one understands you, ’cause probably you’re crying, you’re trying to say this, no one can get what you’re feeling. Even anyone who has been in pain, even a minor headache, you feel like any little thing is making you irritated, but this is a lot of pain. This is very excruciating pain. And then if you combine it with feelings of being isolated. Yes, so it’s not — it’s a very bad personal effect. So it does take a lot of courage.

As a child, I knew — I had this feeling — I knew that people around me think I’m going to die. So to me this I think — the good thing it gave to me, it gave me a lot of positive motivation and a lot of courage to excel and do what I do. So this pushed me probably in school to try to see if I can excel to do the things beyond the limit people expected just because of the conscious awareness that everyone around you views you as somebody who’s incapable, or someone who is going to die, or someone who they don’t see as being productive as enough. So that has been one of the motivating factors to probably even the advocacy work that I’m doing right now just to challenge the norm, or the thought that people probably have about sickle cell.

[MUSICAL INTERLUDE]

TUSUUBIRA: So sickle cell is mainly an awareness disease. Why am I saying an awareness disease? It’s because what fuels it is people not being aware, and because people are not aware, this creates a lot of misconceptions and beliefs. I can give an example. Sickle cell was discovered probably — the first sickle cell person was discovered 106 years ago in the U.S. But we had sickle cell in Africa because this was a black American man from Sudan — African-American man from Sudan. But in most of the African tribes sickle cell has no local name. This means that there is a lot of denial that there’s something going on in the tribe, or in the society, but if it has no local name then we don’t talk about it, because if we talk about it then it has a name. But because the tribes don’t have a local name, then it means there is this inherent denial that people don’t talk about it. They know there’s something here, but people do not want to talk about it. I’ll give a case in point in my — in Uganda.

In Uganda, we have Buganda Kingdom — this is the biggest kingdom in eastern Central Africa. This year we had a campaign where we worked with the king so he could accept to make sickle cell awareness the theme for his birthday run. And through bringing that to attention of the king and the chiefs and people around him, the kingdom did give sickle cell a name — this in 2006 — a disease that has been around and affected so many people in the kingdom, but this is just to show you the denial that is existing in our cultures. So because there’s this form of denial, there are a lot of misconceptions. The first misconception is people think that sickle cell is a curse — it’s a curse or it’s a spiritual issue. So it means that if I have sickle cell then the belief is this woman has given birth to a sickly child. She’s probably a bad woman, or she’s cursed, or all the kids are going to be cursed. That’s where issues come in. That’s where the main problems come in.

On top of that, sometimes, on top of the curse, they believe that there’s probably bad blood. “So that family has bad blood. They have somebody who’s already sick. That brother there is already sick after two weeks, so it’s not a good family to associate with, maybe to marry there or to be friends with.” So that’s one of the misconceptions. The other misconceptions that still exist regarding sickle cell — there’s a belief, especially in the country, in Uganda where I’m from, when somebody is born with sickle cell, people automatically give you a date of death. Normally, no one knows their date of death, right? But with sickle cell people will tell you, “This baby has sickle cell. You have to be careful. This baby will likely die at 5 years or even before 5 years. I don’t know if he makes it past 5 years, he will not make it past 8 years. You know, now he’s 8 years, I don’t know, we worry he will make it past 15 years. Or he’s 15 years; oh, he has come a long way. We are really worried. We don’t think he’ll make it past 20.” So this is the kind of norm that happens. People ascribing their — to the extent that when people hear this, especially some parents, they will not take their kids to school because of worry, “I’m spending my money on him. I think he’s going to die, so why would I spend money on this sick child, or who’s always in hospital, while the other children are actually normal?” But the fact is having sickle cell you should be a normal person. You should just — it’s all about the person having sickle cell having an understanding of my body and myself. Even the family understanding of how best do I take care of myself to be a normal person, because through that we see people who have sickle cell can work, can be productive to society. But because of that lack of awareness, people will not take kids to school because they think they’re going to die.

[MUSICAL INTERLUDE]

VOICEOVER: Before founding the the Uganda Sickle Cell Rescue Foundation, Sharifu was a volunteer on another project meant to raise awareness and understanding of the disease. It was when he and his colleagues organized an event for those interested in knowing more that he saw the potential for real impact.

TUSUUBIRA: So when we pulled off the event, that’s where the thought of now starting a — when people came, the conference hall literally was picked up, was packed up with sickle cell people. People who were literally sick, and you could see that everyone — it was the first time people could feel the fact that I’m not alone in this world. I’ve always been feeling alone, but there’s thousands of people seated in one hall. We all — probably because in my country, because of what happens with sickle cell, people even have a belief that people with sickle cell look alike. So they’re like, “But he don’t look like them. Are you sure he have sickle cell? You don’t look like them.” Because that’s another way of showing you how the society has labeled people with sickle cell. This belief that they should be very slender, have very yellow, yellow eyes, have a very pale appearance. There’s a very … I don’t know how I can paint the picture for you to have an understanding of how people think that people living with sickle cell would be. But in this case, this was a whole 3,500 people sitting in the same hall, literally to them looking alike. If you probably — if any of the people who had such a belief came to that place would think, “All these people related?” But so from that point when so many people came together, their question was what would you do now for us? You have called us here. You have told us all these things about sickle cell. You have told us there’s a cure. No one literally in Uganda at that time was talking about bone marrow transplant. So we said, “No, there’s a cure.” So for those families that can afford — and I’m happy to say since then every month at least I’m aware of one family that goes to India, or wherever, for bone marrow because we talked about it. So that was the turning point, and that’s where the idea to conceive, to start up Uganda Sickle Cell Rescue Foundation was born.

[MUSICAL INTERLUDE]

TUSUUBIRA: So what do we hope to accomplish with the Uganda Sickle Cell Rescue Foundation? When we started in 2013, the first thing we did was to train sickle cell counselors. Why counselors? From my own personal experience, I do know that, I mean, maybe I didn’t get any mental issues, or even I had mental issues — I don’t know maybe — maybe I was depressed at some point, or I would just overcome my depression, but the biggest need was to offer psychosocial support to the people affected and to the families affected, because if we are going to change the way society views a disease or a condition, we need to start by changing ourselves as people who have sickle cell. So this — what do I mean by changing ourself — people who have sickle cell? There’s a big problem for disclosure. So many people — back home in Uganda — so many people do not want to say I have sickle cell. They literally can easily say I have HIV than saying I have sickle cell. I’m not saying that HIV is bad. No. But what I’m saying is a lot of work and awareness and all this has been done toward sickle cell — towards HIV — so someone will feel comfortable saying, “I have HIV,” and so people say, “Oh, he has HIV. I think that that’s OK. That’s pretty OK.” Than someone saying, “Oh, I have sickle cell.” Because people will be like, “What? You have sickle cell? Oh, what’s your age now? Twenty-six? Oh, we hope you can make it to 30. You know, you’ve come so far. We look forward to you making it to 30.” So that’s one of the biggest issues. So this was to do with awareness. Psychosocial support and awareness.

At 23 years, I decided to get married. So I found a lady, I told her I wanted to marry her. And I told her I had sickle cell. But what happened was she told me later when she went home and told her mom, “This guy wants to marry me.” When she said I have sickle cell, all her family members started crying. Her siblings — basically, her sisters and the mom — everyone was crying.

But just as to show you the kind of perception people would have. So awareness is one of the things we are trying to do and we’re trying to make because sickle cell disease is an awareness disease.

One of the things we are working to achieve is to make sure we have inclusion of people living with sickle cell. So if people have sickle cell, I don’t feel like I’m being isolated from my own family, because a lot of the time stigma starts from the family.

So one of the things we do is family empowerment through the foundation. So empowerment in terms of two arms — two aspects — because families hide their sick. Why do they hide their sick? Sometimes they feel that when people know so-and-so has sickle cell, then her sister will not be married because of all these social things in society, like so we’re better off hiding her, or not taking care of her when she’s sick, so people do not know that we have sickle cell in the family. So this causes several complications. People become lame. I myself, I mean, I was disabled for quite some time. I had to use crutches for quite some time. But one of the things that happened when people hide their sick for the fear of what society is going to label them, or society is going to perceive them, so in a way we try to work with families such that they can feel comfortable and disclose, and say, “Yes, so-and-so has sickle cell.”

So one of the key things that’s important — so because ignorance is one of the things that is propagating the sickle cell burden, so the biggest need has been to create awareness about sickle cell. In terms of awareness, what do I mean? We want people to understand that when we say blood disease, you can know that it’s not like HIV that I’m going to contract it, but or I was born with it, but we are talking about inherited in terms of it flows in the family line — family line means like the way in terms of — we give examples for height. Some people, their families they’re light-skinned. The whole families know this is a genetic thing. That family people are light-skinned. In this family it’s genetic, people are tall. Or it’s genetic, people in the family are short in terms of height. So in a way, we give such examples for people to be able to understand when we talk about genetics, so they will not say, “No, this disease for us on our side we don’t have it. It’s you, the woman, who brought it. It’s because we find in society there’s a lot of blame game. Husbands say, “No, this woman is the one who brought this disease in my home. So because they don’t understand in terms of the genetics behind it, so the biggest thing is to make sure people understand the genetics that you can relate to the same thing like height, to the same thing like skin color, to the same thing like sickle cell. That’s one of the biggest things for understanding. When it comes to the effects that it has on somebody’s life, or in terms of pain, we give an example of a gutter — of a gutter on the roof. When you have trees at home and leaves fall in the gutter, when it rains water will not flow in the gutter because the leaves will be cluttered. The leaves will be holding together in the gutter, so they block the water flow. So this is the same example we give for blood vessels. When these cells that are crescent-shaped, when they hold together and they clutter, they have higher chances of sticking together, these will block the blood from flowing. So in a way someone can relate: “Yes, I have a gutter. Okay, I see that. That’s the way it blocks.” Then they can easily understand the way these cells definitely get blocked. So the next thing would be how do we make somebody understand the pain?

Like when the blood has blocked — remember, blood is what transports oxygen, the nutrients and all the good things in the body. If it cannot get to a point it means that the point — the body parts that have been cut off from that blood supply obviously will not be fine. Yes, they are going to move out of their normal state. Here, so this is where the complications come in. The pain, the disability, the organ failure, and there are other — retinopathy, blindness, bone necrosis — all those come out of the fact that a blood vessel somewhere has been blocked. An example: If the blood vessel that has been blocked is in the eye, retinopathy or blindness is a complication from sickle cell comes in. We have people who have secondary blindness not because they were born with it, but through sickle cell. If the blood vessel that has been blocked is in the brain, this is where strokes come in, and strokes are very, very common among people with sickle cell, just because the blood vessel that got blocked was in the brain. If the blood vessel that gets blocked is in the hand, it’s where they’ll have the pain. Yes, I have pain in my hand. If the blood vessel that gets blocked is in the bones, especially this is where we have the hips, or other parts of the body; you find that the bones will die out because that bone — the bone part can’t receive any oxygen, so it will die off. So it’s called necrosis. So someone who was born — someone will become physically disabled because of that. So that’s one of the things we try to make people understand the effects that that would have.

VOICEOVER: Sharifu is well aware of the scope of the challenge in changing people’s perceptions about sickle cell disease. He has readily used himself as an example of what someone with the disease can achieve. He also knows that using technology and forming partnerships on both the local and national level are critical to changing minds and changing policies.

TUSUUBIRA: So how do we execute awareness about sickle cell disease? So we execute awareness in several forms. The first form is to have a person like myself who has sickle cell share his story about how he has lived with sickle cell, how it has affected his life. And in a way people will probably feel connected with the person and see the need to do something about the change for sickle cell. The other aspect in terms of how we do actually execute the awareness. So we work with local communities. An example: This can be a school, a church — in terms of when I say church I talk about worship place — this can be for Muslim, Christian or whatever denomination, because we’ll know that we’ll find several people there and people who are going to get married, obviously, go through such institutions back home. So still in addition we work with local leaders. Local leaders, why? Because they probably they’re the leaders in a certain area, they can be able to call up people and people can come. Then when you call up people, the aspect is still, be it in a school, be it at a church, be it in a market, it’s all about being able to meet the people who we can now tell the information about sickle cell.

So in a way, the best way to execute awareness is to meet the person probably one-on-one, or to meet them in a group but in person, I mean in person — to meet them in person. That’s one of the best ways that we are trying to execute the awareness.

Yes, through this age of technology we’re also trying to use social media, because so many people are on social media, so we try to share stories, post these things, facts about sickle cell, how it has affected people’s lives. We are trying to share that on social media as well in a way to capture people who are on social media. So that’s also another aspect of making sure we can engage the people who are on social media. So, in a way, those are some of the ways through which we execute sickle cell awareness.

For any grass-roots organization, one of the key things that we have to always have are partners to make sure that what we do can be sustained, or to make sure that what we do can have the impact that we need it to have. So governments, like I say, in Uganda, we have what we call the local governments who starts from the LC1, or the Local Council 1 — local governments are part of the biggest stakeholders we work with because local governments are the governments that govern the markets, the places where people actually are, excluding their overall — the central government. But you still — still as a nonprofit, or anyone who is involved in grass-roots advocacy, it’s important you need to engage the central government as well because you need policy to be able to support whatever you’re doing. Because so far, right now, like an example in Uganda, this year we have started talking about how through the effort we had with the kingdom, now it has gone to the legislative house. Members of the house are asking: Do we have a policy on sickle cell? What are we going to do about sickle cell? Because of the awareness that it has been brought about, so action and steps have been taken now to lay framework for putting in place a national policy for sickle cell disease, which would involve people testing before marriage. That would be a big game changer, because when we go in the communities, we tell them, “No, before marriage take the sickle cell test. If you can’t afford it, probably can go to the nearest hospital or come to our offices.” So you need the central government for the policy to back up what you’re doing, which will in a way bring up more sustained and impactful meaning of the work that you do.

In Uganda, we are hoping to reach a time where — we are aspiring to reach a time that someone who has sickle cell will not feel shy to say it, will be comfortable in any place, whether in a church, whether before marriage, whether at the workplace, to say, “Yes, I have sickle cell,” and people will hug them and feel comfortable about them. That’s our biggest aspiration as a foundation.

VOICEOVER: Sharifu is also finding help from the YALI Network and other Mandela Washington Fellows. And we asked him what advice he has for YALI Network members who are also working to push back against ignorance, intolerance and stigma.

TUSUUBIRA: One of the good things that happened through the network, other fellows who don’t have sickle cell have been putting me through to people they know back home who are running nonprofits for sickle cell. An example of Togo, in Ghana, in Congo, Brazzaville — all the fellows that I met I was able to make connection with, giving my contact to people who they know who are running sickle cell nonprofits. So in a way this has strengthened the collaboration that we shall have. The YALI Network has offered a platform to strengthen the collaboration for sickle cell awareness, because now I can share what I’m doing with someone in Togo — how can they learn from me, how do they — even the literature I have, because if I have more literature for sickle cell, I can always give them the literature, they can print and just translate. It saves a lot of time and money for someone to make a whole new literature of something which is already available, so the YALI Network has provided this avenue to grow the network for advocates of people who are involved in sickle cell work in Africa. I think the biggest way to have an impact is to include people who are deeply affected, or deeply touched by whatever you are passionate about. This in a way because you would get very honest feedback. You will get very honest opinions about what you’re doing and what you hope to do. Because someone is telling you is one who is concerned. It’s not like they’re there for anything, but they’re there because they feel that something has to be done to change their lives, or to change the lives of other people like them who are in such a situation. So inclusion is very part. And also another thing which also probably is a big step, you have to build on partnerships. Take every avenue to bring people on board; other community members, local businesses, local organizations. Just partner with as many people as you can, because through the partnership you’ll be able to grow the ripple effect. You’ll be able to make sure what you’re doing can get to more people, because the partnership, the collaboration will offer a platform to share the small resources that you have through collaboration to achieve more. So partnership is also another thing. When you start, seek for partnerships. Partner with everyone, with anyone, with whoever you think will be able to bring something to the table. Is it moral, is it spiritual, is it financial? Whoever it is, in a way this will get you going where you want to get.

I think what advice do I have for other YALI members who are passionate about something in their community? The advice is you have to start somewhere. Like I shared, it was a briefcase organization before we got someone to donate to us office space. So it means we had started, even when we had no office, basically a briefcase, my bag and the email, so you have to start somewhere. It’s all about starting. Don’t worry that I don’t have any resource. I know no one. I have no idea. But if you’re passionate about anything, just start up. Just start even if you’re one person, along the way you’ll build and be able to grow it. You just have to start. That’s the biggest advice I have for other YALI Network members who are passionate about things in their community. Just start. Do not wait for anything. Just start.

VOICEOVER: Sharifu is hopeful that with awareness, knowledge, communication and access to credible information, more people will come to understand that those living with sickle cell disease have both the ability and the right to be full members of their communities.

Thank you for tuning into another YALI Voices podcast, and a special thank you to Sharifu for his commitment to making his community and the world a better place. Be sure to share your thoughts on this podcast and other important topics on the YALI Network Facebook page at facebook.com/yalinetwork.

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